Comments on this post are now closed – thank you to all civil contributors!
Update 2015: excellent summary of the controversies on this subject at MosaicScience
Update 2017: on the results of the PACE trial of CBT for ME/CFS and errors at SBM
Last night I was lucky to be at the Royal Pharmaceutical Society for the annual Sense About Science reception.
I am a member of Voice of Young Science, which is a network set up and supported by SAS that allows young scientists to get involved with pro-science activism. Through this group, we are able to participate in public-facing discourse about science and challenge common misconceptions. This takes the form of supporting campaigns (such as Libel Reform) and contributing to publications. For example, I picked up a copy of Peer Review: the nuts and bolts last night because I joined discussions about its content and aims. Anyone young scientists who’d like to, definitely sign up!
Many of us London-based VOYS members went along last night to show our support for SAS and the RPS, and to find out who won the first John Maddox Prize for Standing up for Science. Sir John Maddox was a long-term editor of Nature and helped expand Sense About Science as a charity, supporting and encouraging its work, as well as helping to establish programmes like VOYS.
Two prizes were awarded this year:
Shi-min Fang
Many of us are aware that China is plagued by superstition and dangerous “traditional” cures in the medical field, which costs many lives needlessly. Shi-min Fang has worked tirelessly to expose clinics that take advantage of people by selling unproven treatments, and to help the public understand the importance of evidence. He is a freelance journalist and has endured threats to his life and physical assaults because of his work. His acceptance video was moving, including:
I consider this award as an acknowledgment of our efforts from the international science community and I deeply appreciate it
Here’s some more on his homepage. Shi-min is clearly deserving of the prize given the scale of what he has undertaken and what he has suffered through standing up for his principles, and for scientific evidence, trying to help others and improve healthcare in his country. Edit: here’s an interview with him on New Scientist about exposing fraud in Chinese research.
Professor Simon Wessely
Professor Wessely has worked for many years on ME (chronic fatigue syndrome) and Gulf War syndrome. ME has been a disease surrounded by controversy, with some people disparaging sufferers as “fakers”, and some patients completely reluctant to consider the condition as anything like a mental health disorder, preferring to insist it is due to an as-yet-undiscovered virus, for example. While those such as Professor Wessely try to help patients through research, and have indeed challenged the misconceptions surrounding ME sufferers, they are also targeted by people who are angry that they are not doing the “right kind of research”.
Wessely has, as a result, been the target of threats and campaigns to discredit him and his colleagues. Wessely acknowledged these colleagues with his acceptance:
I have been helped and sustained by the support of so many other wonderful clinicians and scientists who work in the same field and have had similar experiences to me over the years, any one of whom would have been equally worthy of this honour
See here for a discussion of some of the early work on these conditions, and here for an interview with Wessely from 2006 that goes over the whole story. Edit: following lengthy discussion below and some posts elsewhere about the prize, the Independent has an article on the controversy, too.
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All in all it was a lovely evening with many friendly faces and some inspiring words from people doing fantastic things for science. Then some fun times in the pub! Perfect, really. Some video of the winners here, New Scientist also has a piece about the event, and here’s Nature’s editorial.
Keep an eye on Sense About Science‘s activities and do get involved!
Purely a figment of your imagination 
Naive and ignorant beyond belief. You obviously have no knowledge of the damage and suffering that the misconceived and divisive psychiatric interference in the medical condition ME has caused.
Try with your best effort to imagine what it would be like to have the worst stomach and bowel disorders, visual impairment, memory loss with cognitive disability muscle spasms and muscle pain, extreme fatigue, very bad flu eg, all glands inflamed and painfull, erratic temperature and night sweats, bladder dysfunction,erratic heart beat, insomnia imagine having those symptoms constantly for years, ( this is a vast simplification to help your ability to empathize) try and imagine being unable to move because you are in so much pain. A psychiatrist then makes a statement that its all in your mind.
You then have to try and convince the health professionals that you are really ill, but they wont back you up with your new claim for benefits because they believe because of Wessely and his elk that you are unable to judge whether you are ill or not.
You then end up, (if your lucky) living in your car or on the street because of this arrogant medieval misconception, that people with a chronic disability who’s lives have been ruined, do not know the difference between imaginary and real illness.
There is an overwhelming amount of real medical evidence proving the reality of ME is a neuroimmunological illness and yet you commend a psychiatrist for ignoring that evidence.
This is really amazing to witness. This award for Wessely reflects a real problem in the human psyche and reflects some kind of inability to accept reality beyond your current sphere of information.
Or maybe worse still you all ignore the science that is proving the chemical abnormalities in immune systems of ME patients so that you can just slap each other on the backs in obllivion.
The next time you are seriously injured physically in any way I suggest you see a psychiatrist ( especially if the injury is not easily visible).
Hey there, I was diagnosed with ME by a consultant neurologist in 1983/4 after becoming ill with Coxsackie B4 virus, there was an outbreak in west of Scotland and the incidence of ME following the outbreak is well documented. The term CFS had not yet been coined. It is equally well documented that Professor Wessely has distorted the definition of ME, conflating with ‘chronic fatigue’. His psycho-social therapies are actually harmful to people with my illness. You may be interested in reading my novel, The State of Me, publish by HarperCollins in 2008, it gives a patient’s point of view. Those of us who fervently disagree with Simon have good reason, we are standing up for science too.Thank you.
Even if we were to accept that Simon Wessely were right about ME, the way in which he has interacted with or described the patient-population is deeply troubling, for instance: “The average doctor will see they are neurotic and he will often be disgusted with them.” Wessely S. In: Psychological Disorders in General Medical Settings. Ed: N Sartorius et al. Hogrefe & Huber, 1990. It is clear that the polarization of the debate between advocates of Wessely’s psychiatric model and the patient-population, backed by WHO classification of ME as a neurological illness, has been substantially worsened by Wessely’s outspoken behaviour and his frequent resort to the press in order to demonize the entire patient-population who disagree with him, not simply the few desperate people who may have threatened him. .
Personally I’m inclined to see Wessely’s behaviour not as an example of standing up for science, but of Clarke’s First Law: When a distinguished but elderly scientist states that something is possible, he is almost certainly right. When he states that something is impossible, he is very probably wrong.
Pushing for science activisim should mean looking at the papers, the arguments, the evidence and the quality of the scientific methodology. In the case of Simon Wessely the arguments are poor and the methodology is poor.
With ME his basic thesis is that it there is no biological evidence that someone with ME is sick therefore it must be a mental health issue therefore it is a belief that the person is ill that is making them ill and therefore CBT will work.
There are many problems with his thesis. Firstly, there is a lot of evidence of abnormalities especially associated with the immune system. In fact others working in the area have had considerable sucess with immune system modifiers such as Rituximab. However in one paper Prof Wessely goes on to talk about not testing people with ME since that will only confirm their illness belief. This has the effect of ensuring biological evidence doesn’t exist. There is also a dangerous side effect which is that the ME diagnois is not very accurate (recent papers suggest GPs have a 50% error rate). Hence avoiding testing could lead to other diseases not being found and treated or comorbid conditions being ignored.
Secondly there is a huge assumption that ME must be a mental health issue because we have not detected abnormalities. Perhaps Prof Wessely took this argumnet from MS which was treated as a mental health condition prior to scanners showing damange to the nervous system. Rather than being a scientific argument it feels like one used in intelligent design that is an inference due to missing evidence.
Thirdly trials looking at CBT for people with ME are very suspect. Take the latest big trial run by Prof White but with Prof Wesselys involvement. They published a protocol with a number of primary outcomes and indicators of harm. They ignored this when they published the results (claiming it is normal practice to rewrite the analysis plan after publication of the protocol). Each of the outcome measures was made easier to achieve with measures for deteriation being made harder to achieve. They come up with a ‘normal level of function’ measure which overlaps with the trial entry conditions and then quote how many patients have this normal level if function but they don’t say how many had it on entry. There are many more issues with this trial such as the lineararity of the scales they use and the psycology of having a technique that tells people they are not ill and then asking them ‘how ill are you’ and using this as a primary outcome measure. Even with all these methodological problems CBT only showed a small improvement over a group with just standard medical care (which wasn’t standard!). Certainly not enough to back Wessely’s thesis that ME is a malformed illness belief.
So this is the standard of science being awarded by the sense about science organisation. I find that worrying.
Sense About Science awards the Maddox prize. Sense About Science has an advisory council – guess who’s on it? http://www.senseaboutscience.org/pages/advisory-council.html So Simon Wessely has awarded himself a prize. So what?
Simon Wessely helped set up Sense About Science, so it isn’t so much a case about standing up for science, but good old fashioned cronyism!
The rational skeptics community urgently needs to switch to the science side from the woo side on this topic.
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Here is Emily’s story.
She died from the disease.
(Permission to re-post)
My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned
30. I still have ME.
ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.
My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now – it’s like that every single day. After all these years I still struggle to understand how it’s possible to feel so ill so relentlessly.
My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor’s visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I’ll go mad with the suffering. Of course it can also be as bad as this for no particular reason – and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music
– the list is long. ME has made my body an agonising prison.
My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I’m on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable – this despite pain levels so high that I hallucinate.
I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.
Many days I feel utter despair.
But, unlike some sufferers, over the long years in which I’ve had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.
My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.
And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:
Please put an end to the abandonment of people with severe ME and give us all real reason to hope.”
By Emily Collingridge 2010-2011
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Nature, the flagship journal of science, has now supported woo and by lending its formerly excellent name to the woo, more people will die.
Anybody can get the disease.
For a less-biased definition of the disease, pease read http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
For historical context, please read http://thekafkapandemic.blogspot.com/2012/05/leroy-and-next-age-of-mankind.html .
Amusing article at JRSM – “Is psychiatry a religion?”
“In this essay, I argue that psychiatry, and its handmaiden, clinical psychology, now constitutes an amorphous system of beliefs, behaviors and attitudes whose functions and doctrines are unsettlingly similar to those held by conventional religions. Are psychiatrists the new priests? Are clinics the new confessionals? Are pills the new prayer? Read on to learn that now may be the time to proudly add ‘psychiatry’ to the pantheon of world religions.”
http://jrsm.rsmjournals.com/content/101/12/579.full?ijkey=6112ebc4b1c24b6205a7a9070cbd7967e4c54162&keytype2=tf_ipsecsha
Statement from the UK charity ‘Invest in ME’:
“”No science is immune to the infection of politics and the corruption of power”
– Jacob Bronowski
We’ll make just one comment on the Sense About Science discussion
Sense About Science states that it is “a charitable trust that equips people to make sense of scientific and medical claims in public discussion”
Yet it gives an award to a person who, in our experience and our opinion, has done nothing to assist people suffering from this disease.
Yet would one expect more from a judging panel that includes people like Colin Blakemore – who, in our opinion as far as ME was concerned, presided over barren and unproductive years in charge of the Medical Research Council?
Would one expect more from Sense About Science – a sibling of the Science Media Centre?
On the Advisory panel of Sense About Science sits – guess who – Professor Simon Wessely.
Here are extracts from from – CORPORATE COLLUSION? By Professor Malcolm Hooper, Eileen Marshall and Margaret Williams
http://www.meactionuk.org.uk/Corporate_Collusion_2.htm
• “At the launch on 11th January 2002 of his Working Group’s Report, the Chief Medical Officer, by then Professor Sir Liam Donaldson, went on record saying: “CFS/ME should be classed as a chronic condition with long-term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease” (BBC News /Health, Friday 11th January 2002).
“The Chief Medical Officer was at once derided by a GP known for presenting and promoting the views of Simon Wessely, for his perverse and immoderate attacks on those with ME/CFS and for his association with Sense about Science, a sibling of the Science Media Centre, who wrote: “The CFS/ME compromise reflects a surrender of medical authority to irrationality. The scale of this capitulation is apparent when Professor Donaldson claims that CFS/ME should be classified together with conditions such as multiple sclerosis and motor neurone disease” (ME: the making of a new disease online at http://www.spiked-online.com/Articles/00000002D3B6.htm ).”
and
• “News reached the ME/CFS community that Professor Colin Blakemore, CEO of the MRC, regarded all the efforts to halt the PACE trials as “water off a duck’s back”; that he was defending the MRC referees who had approved the PACE trials; that he took the view that “CFS/ME” was not his concern and that he was simply amused by the situation.
The Countess of Mar was so concerned at the damaging and destructive influence of the Wessely School that she requested a meeting with Professor Blakemore. This took place at the House of Lords on 20th April 2004 and lasted for two hours. Earl (Freddie) Howe was also present. Both the Countess of Mar and Earl Howe were seasoned debaters in the House of Lords and both were profoundly disturbed at what occurred at that meeting, the outcome of which was fruitless.
Professor Blakemore was accompanied by Elizabeth Mitchell of the MRC and she did most of the talking. It was apparent that as far as the MRC was concerned, Professor Wessely is greatly revered and what he says about “CFS/ME” will be accepted. It was also apparent that the MRC’s mind had been made up and was firmly closed. There was to be no consideration of the biomedical evidence that proved Wessely et al to be wrong.”
and
• “Of relevance to the ME/CFS issue is that apart from Tracey Brown, other members of the Sense about Science Working Group included Professor Colin Blakemore, currently Chief Executive of the MRC that is supporting and funding the psychiatric PACE trials on “CFS/ME” (with which AfME has joined forces with Simon Wessely, Peter White, Michael Sharpe and Trudie Chalder) and Fiona Fox, Director of the Science Media Centre, whose Science Advisory Panel includes Professor Simon Wessely.“
Sense About Science’s ethos –
• We help people make sense of current discussions rather than taking them back to school
• We stand up for scientific inquiry, free from stigma, intimidation, hysteria or censorship
• We want everyone, whatever their experience, to stand up for evidence in public life
Fine words – one can read similar sentiments for the Lancet, Science Media Centre – even the MRC. On paper they read well – in practice these organisations fail and their words reek of hypocrisy.
This award shames real science.
How ironic that the other John Maddox award goes to somebody who would “uncover clinics promoting unproven treatments, and to bring a wide public readership to the importance of looking for evidence.”mentioned”
Sense about Science – perhaps a better slogan would be “equipping people to make non sense out of science”.
Meaningless awards – alongside fatuous and insignificant “research” – distort the landscape of proper science and do nothing to help people suffering from this disease.
The Saville case will hopefully show the full scale of corruption in the establishment.
We can hope that a similar wave will eventually reveal the real story, and motives, behind those who have been in positions of influence with regard to ME and who have helped destroy the lives of ME patients.
We hope they will not be immune from accountability.
Their actions will be evaluated and judged in the same way as is now occurring with Savllle.
This is just more spin in the continuing fantasy which has so characterised UK establishment’s false and flawed approach to research into ME.”
I’m glad you had a pleasant evening, but Simon Wessely no more deserves to be honoured as a scientist than I do. The damage he has done to patients with ME over the last 20 plus years is immeasurable. The ethos he promotes has helped block the progress of true scientific research into this poorly understood and extremely serious condition. As a result many have remained sick for decades and some have died, including a friend of mine who died aged 48 of ME-related pneumonia after years in a nursing home unable to speak, sit up, eat solid food or even shit normally. He had been a patient of Peter White, a compatriot of Wessely, who did him only harm. Please do your homework before posting this sort of ridiculously ill-informed commentary. Giving the award to Wessely makes science a laughing stock, which is the last thing we need in these difficult times.
It takes a particularly twisted perversion of logic to see how the judges arrived at their decision. (Either that, or as others have pointed out, plain old cronyism)
As one who has consistently ignored scientific evidence and who’s actions over the years seem to have epitomised the term “anti-science”, I can think of few people less worthy than Prof. Simon Wessely, to claim this title.
Painting himself as the victim of death threats, is merely the latest act in the long-running game of smoke and mirrors which he plays, but ultimately it won’t hide the fact that real science is exploding the myths that he has created.
The award of this prize is surely a joke.
“The award of this prize is surely a joke” … surely as big a joke as Brian Deer getting this press award
And what may I ask is the problem with Deer getting a journalism award? I have issues with his personality but his work exposed Wakefield as a fraud. I don’t countenance anti-vax sentiment on my page I’m afraid.
Gary Null hosted a radio programme (last year I think) during which he interviewed both Andrew Wakefield and Brian Deer. Whilst Dr. Wakefield was able to calmly and comprehensively answer all of the questions put to him, I cannot say the same of Mr Deer. He quickly lost his cool and gave out all the signals of someone who was not being entirely truthful and had been caught out. It was around this time that Dr Wakefield filed suit for deformation in the U.S. courts against Mr. Deer (together with Fiona Godlee and the BMJ) – a case which I believe is ongoing. It is worth pointing out that Dr Wakefield’s colleague, John Walker-Smith was subsequently cleared of misconduct by the GMC in respect of the same matter which resulted in Dr Wakefield’s removal from the medical register.
Please see the following post:
I would ask that the case of Wakefield be judged on the facts and not Mr Deer’s character or ‘interviewability’ – indeed, fraudsters are by definition generally charming and convincing.
David G writes “Even if we were to accept that Simon Wessely were right about ME, the way in which he has interacted with or described the patient-population is deeply troubling, for instance: “The average doctor will see they are neurotic and he will often be disgusted with them.” Wessely S. In: Psychological Disorders in General Medical Settings. Ed: N Sartorius et al. Hogrefe & Huber, 1990.”
Yes this is indeed deeply troubling, because the full quotation is as follows:
“The absence of abnormnal tests leads to the erroneous conclusion that nothing is wrong, or alternatively to the understandable but misguided tendency to over interpret minor abnormalities or variants. The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: “the average doctors will see they are neurotic, and he will often be disgusted with them. Often he sends them away with as little ceremony as possible” (Alvarez, 1935). Thus, attitudes towards psychiatric illness affect both patient and doctor with equally adverse effects on prognosis”
I was quoting myself from a physician at the Mayo Clinic in 1935. He disproved of the way in many patients presenting with what would now be called CFS were dealt with, and continued “and yet these poor people suffer the tortures of the damned”. I was suggesting that nothing much had changed over the years to 1990, and the harm that this does to patients, that having no abnormal tests does not mean that nothing is wrong, and that doctors must always treat sufferers with respect. This misquotation of what i wrote, done deliberately so as to reverse the meaning, is I am afraid all too common. The people who originally did this many years ago, continue to repeat this, despite knowing that this is a distortion. The purpose of this and numerous other examples is to persuade people that I have said things that I have not said, written things that I did not write, and believe things that I do not believe. For that reason all my research on CFS is available for free on my website – http://www.simonwessely.com. By all means take issue with what I have written, but first of all make sure it is indeed what I have written, and not what others say I have. They are sadly rarely one and the same thing.
Simon Wessely
Hi Professor Wessely, I am sure you are aware of the work of Professor Peter Behan, the consultant neurologist who diagnosed me – and many others in Scotland – with ME at his clinic at the Southern General Hospital in Glasgow in 80s. He worked with Dr Melvin Ramsay’s criteria (Dr Ramsay helped found the ME Association). I had never heard of ME or Coxsackie B4 until I became ill. There was no internet in 1982, I did not jump on an ME bandwagon. Moreover, I have/had no history of psychiatric illness. I was fully well before Coxsackie. My life was shattered because of hugely disabling physical symptoms. I was bedridden and had to give up my Honours degree. I did everything in my power to get better and – stupidly – pushed myself, only to relapse time after time. I describe myself now as moderately ill with severe dips. Thirty years on, I am housebound at least 2 to 3 days a week and my life is far from normal. Because of your involvement in my illness I am now, by some, probably labelled as a militant (just for standing up for people with my illness), and, more frighteningly, someone who has aberrant illness beliefs and is perpetuating her ill health, someone who really just has to ‘get out and exercise’ (as one newspaper cheerily proclaimed last year after PACE). I am sure you can understand why that makes me angry.
I encourage anyone who wishes to learn about the history of prejudice against PWME to read Dr Ramsay’s book The Saga of Royal Free Disease. Available from ME Assoc.
*Prof Behan appeared in a BBC Alba documentary on ME earlier this year. I too took part, as did Dr Shepherd, medical advisor to MEA. Details are in sidebar of my blog for those who are curious.
Ean Proctor? GET and CBT? Serious neurological disease downgraded to a syndrome?
Simon, I have yet to see you name a single person as having threatened you. Perhaps you should either actually present evidence of who you are referring to or give up with the claim. Don’t you agree that you should have done this by now?
I would have thought if one had received death threats one may have contacted the police.
Until there is clear evidence to indicate a death threat had been made, I will assume that none have been made. I like to base my opinions on evidence.
I agree creamcrackereduk.
This is what reasonable people do.
Agreed. Why did you not go to the Police?
On another note how about set up and question and answer on your website for us so you can de-bunk the rumours? I didn’t see you ever fighting for biomedical research for us since I was first diagnosed in ’96, or appearing in the press sending wishes to the families of those whose are now Childless and Parentless?
Yes Ke, it is very, very strange that not a single person has been prosecuted for the many alleged ‘death threats’ against Prof Wessely.
There is absolutely no evidence that a single person with the neurological illness myalgic encephalomyelitis has ever threatened him. Despite this, he chooses to demonise the entire patient community in the media by repeatedly insisting that patients with the illness are doing so. This seems to me to be most unprofessional behaviour for a doctor.
A person signing themselves ‘M.E. sufferer’ on an email is not proof that they actually have the illness, any more than my signing this ‘Professor of Psychiatry’ would be proof that I am one .
And, more specifically, as an organisation supposedly promoting the best in science has presented this award actually *because* of the recipient’s ability to press on despite the alleged abuse, *real* scientists would *require* that he publish all the evidence or withdraw his claims. If Nature is to retain any credibility over this prize – named after another rather unsavory character if Wiki is to be believed – then it should demand full disclosure of the evidence leading to the award.
Well said Spamlet.
Wessely appears to have built a house of cards re the death threat claims, much like his peddling of erroneous theories on M.E. Methinks he doth protest too much.
I simply don’t believe Simon Weesely’s version of events. The reason I don’t believe them is that no work has gone into these replies, everything is copied and pasted. This Man likes the short way round and that’s what he’s done with our illness. It’s pointless to ask for Q&A with him because he can’t wriggle out of whats written in black and white, or from the horses mouth – Ean Proctor. Unless I see clear answers as to why some horrendous things have written about us, then I will continue to blame Simon Wessely for the lack of care, the Deaths and for ruining my life, ignoring thirty years of Science before his shabby fingers touched this illness and the next thirty years of ignored Science.
Along with requiring proof rather than allegations of death threats, we have no proof that the author going by the name of “Simon Wessely” in the comments section of this blog is the actual Simon Wessely of KCL. “Simon Wessely” may possibly be Simon Wessely but I’m employing caution until confirmation.
Correct, and indeed we don’t know when THE Simon Wessely is putting across his opinion because of his continued desire to quote others attacking patients.
I am not sure Simon why you deny the existence of positive abnormal tests and why you are interested in a label. CFS would not interest a scientist if you were one. Can you explain why you have any interest in a label if it has also been claimed you exited this area 10 years ago and when you are not scientist?
What we have, is a heterogenous population that occasionally includes ME patients. A neurological disease.
I am not going to respond to questions like why haven’t I named those who have threatened me and such, because it doesn’t really matter what I say, you either believe what journalists have written on this issue and who have seen the evidence or you don’t. Nor am I going to get into a prolonged exchange. I do however wish to respond sepcifically to this point, which is often made, and which is a variation on the theme of the claim that the patients that I have seen, now numbering over a thousand in the last couple of decades, do not have this illness, or do not have abnormalities on various research led investigations that we have done over years and so on and so forth. I respond to that, because basically it is an insult to them to claim that they do not have CFS/ME, and must in some way be “psychiatric” whatever that word means. So here is the response that Tony Cleare and I wrote to thisalgto,wihi when it surfaced when we published the first non replication of the XMRV study, and which in turn triggered a considerable number of deeply unpleasant e mails, threats and allegations made against not me, but against the virologists who carried out the lab work for the paper. PO o here is our response from the PLOS ONE website. If you don’t want to read the whole reply, here is the key closing sentence:
“”On behalf of the patients that attend our CFS clinic, we resent the implication that they are in some way different, less ill, less disabled, let alone less deserving, than CFS patients in any other service or setting. It is otherwise, and we have provided a wealth of published data to back this assertion””
and here is the full response:
“As the clinicians and scientists who provided the samples that were tested at Imperial, we wish to respond to some of the comments here and elsewhere regarding the patients who provided these samples.
In the paper we provided extensive details of the sample selection, criteria, assessments and investigations that are routine in our service, together with references/citations to all the material
To re iterate.
1. The criteria that we use are the Fukuda et al 1994 criteria that are far and away the most widely used across the world and in the research literature. We do not use the so-called “Canadian criteria”, which are designed for clinical use, not operationalised and do not translate easily for use in research. Even so, had we attempted to do so, a substantial proportion would have also met these clinical criteria.
2. The patients resembled those seen in secondary care and tertiary care services elsewhere – most particularly they are similar to those seen in clinics in Australia, USA, Scotland, England and Northern Ireland (Wilson et al, 2001; Hickie et al, 2009).
3. We follow the same psychiatric exclusion criteria as mandated by the Fukuda criteria. We do this on the basis of semi structured interviews and assessment that we have also published. In addition, we also exclude patients with chronic somatisation disorder as defined by DSM-IV, which is not required by the Fukuda criteria, but most experts and clinicians agree are a different population. This is only a small percentage of our referrals.
4. In answer to one question, yes, our patients all report both mental and physical fatigue, exacerbated by mental or physical effort. Nearly all also describe post exertional fatigue and malaise.
5. We have a standard laboratory protocol for investigations, which are performed on all those referred to the clinic, unless they have been done recently by the referring doctor. These are solely for the purpose of excluding other diseases that can sometimes mimic CFS, and are part of the differential diagnosis. This is standard practice in every CFS service of which we are aware and forms part of every definition of which we are aware, including the “Canadian criteria”. In addition to the standard work up, we also now routinely test for coeliac disease, because we found a 2% prevalence of undetected coeliac disease (Skowera et al, 2001). In answer to another question, we perform a 9.00 am cortisol as a screener for Addison’s disease.
6. In addition we also perform tests as part of research protocols. We always tell patients that these additional tests and investigations are not necessary clinically, and are performed with informed consent. Thus patients in our service have also co operated in studies of PET and fMRI neuroimaging, autonomic dysfunction, neurochemistry, respiratory function, vitamin status, anti nuclear antibodies, immune function, neuroendocrine function and genetics (see references). Hence it is untrue to state that patients at King’s for example do not show alterations in immune function – in fact they do – see Skowera et al, High levels of type 2 cytokine-producing cells in chronic fatigue syndrome.” Clinical and Experimental Immunology 2004: 135: 294-302. Similarly, many of our patients also show altered neuroendocrine, neurochemical and other biological parameters, and we have published many examples of these (see references below). It is therefore simply untrue that we either seek to find no biological changes in CFS, or fail to report those that we do find.
7. On the other hand, it is true that those who receive a diagnosis of cancer would be and are excluded from a diagnosis of CFS and if this is detected they would be immediately referred to the relevant clinical services. It is possible that this may be a difference from the cohort originally reported in Science, if the Wall St Journal is correct (http://online.wsj.com/art…).
8. We do not perform these additional tests to confirm or refute a diagnosis of CFS, but to further understanding of the illness. If and when a properly validated diagnostic test is developed for use within the National Health Service, all our patients will be offered it free of charge, just as they are already offered diagnostic assessment, investigation and treatment free of charge.
9. We did not perform any selection in any shape or form of the samples that we hold to send to Imperial College, as again has been suggested.
Overall, we wish to emphasis, and to do so emphatically, that our patients are typical of CFS patients seen in specialist care elsewhere. We specifically refute the suggestion that our patients are in some way more “psychiatric”, whatever that means, than those with “real CFS”, an assertion that has been repeatedly made in other venues. The rates of co morbid psychiatric disorder, for which we routinely screen, are again similar to those seen elsewhere. We draw attention to another study that compared two services run in the same London teaching hospital, one by an immunologist, the other a psychiatrist, but showed no fundamental differences between the two (White et al, 2004). On behalf of the patients that attend our CFS clinic, we resent the implication that they are in some way different, less ill, less disabled, let alone less deserving, than CFS patients in any other service or setting. It is otherwise, and we have provided a wealth of published data to back this assertion”
Professor Simon Wessely, Professor of Psychological Medicine
Professor David Collier, Professor of Psychiatric Genetics
Dr Anthony Cleare, Reader in Neuroendocrinology
REFERENCES
Allain T, Bearn J, Coskeran P, Jones J, Checkley A, Butler J, McGregor A, Wessely S, Miell J. Changes in growth hormone, insulin, insulin-like growth factors (IGFs) and IGF-binding protein-1 in chronic fatigue syndrome. Biol Psychiatry 1997;41:567-573
Bearn J, Allain T, Coskaran P, Miell J, Butler J, McGregor A, Wessely S. Neuroendocrine responses to D-fenfluramine and insulin induced hypoglycaemia in chronic fatigue syndrome. Biological Psychiatry 1995;37:245-252.
Caseras, X., David Mataix-Cols, Vincent Giampietro, Katharine A Rimes, Michael Brammer, Fernando Zelaya, Trudie Chalder, Emma L Godfrey (2006). “Probing the working memory system in Chronic Fatigue Syndrome: An fMRI study using the n-back task.” Psychosomatic Medicine 68: 947-955.
Caseras X, M.-C. D., Giampietro V, Rimes KA, Brammer M, Zelaya F, Chalder T, Godfrey EL (2008). “The neural correlates of fatigue: A fatigue provocation study in Chronic Fatigue Syndrome.” Psychological Medicine 38: 1-11.
Cleare A, Bearn J, Allain T, Wessely S, McGregor A, O’Keane V. Contrasting neuroendocrine responses in depression and chronic fatigue syndrome. J Affective Disorder 1995;35:283-289.
Cleare AJ, Sookdeo S, Jones, J, O’Keane V, Miell J. Integrity of the GH/IGF axis is maintained in chronic fatigue syndrome. Journal of Clinical Endocrinology and Metabolism, 2000: 85: 1433-1439.
Cleare AJ, Miell J, Heap E, Sookdeo S, Young L, Malhi GS, O’Keane V. Hypothalamo-Pituitary-Adrenal axis function in chronic fatigue syndrome, and the effects of low-dose hydrocortisone therapy. Journal of Clinical Endocrinology and Metabolism 2001: 86: 3545-3554.
Cleare AJ Keane, V, Miell JP et al. Levels of DHEA and DHEAS and responses to CRH stimulation and hydrocortisone treatment in chronic fatigue syndrome. Psychoneuroendocrinology 2004;29:724-32.
Cleare AJ, Messa C, Rabiner E, Grasby P. Brain 5-HT1A receptor binding in chronic fatigue syndrome measured using positron emission tomography and [11C]WAY-100635. Biological Psychiatry 2005: 57, 239-246.
Di Giorgio A Hudson, Jerjes W, Cleare AJ. 24-hour pituitary and adrenal hormone profiles in chronic fatigue syndrome. Psychosomatic Medicine. 2005;67:433-40.
Heap, L., Peters T, Wessely S. Vitamin B status in patients with chronic fatigue syndrome Journal of the Royal Society of Medicine 1999: 92: 183-185.
Fritz E, Smith J, Kerr J, Cleare A, Wessely S, Mattey D. Association of chronic fatigue syndrome with human leucocyte antigen class II alleles. Journal of Clinical Pathology 2005;58:860-863.
Hickie I, Davenport T, Vernon S, Nisenbaum R, Reeves W, Hadzi Pavlovic D, Lloyd A, Are chronic fatigue and chronic fatigue syndrome valid clinical entities across countries and health care settings? Australian and NZ Journal of Psychiatry, 2009; 43:25-35.
Jerjes WK, Cleare AJ, Wessely S, Wood P, Taylor NF. Diurnal patterns of salivary cortisol and cortisone output in chronic fatigue syndrome J Affective Disorder 2005: 87: 299-304.
Jerjes WT, NF; Wood, PJ; Cleare, AJ. Enhanced feedback sensitivity to prednisolone in chronic fatigue syndrome. Psychoneuroendcrinology. 2007;32:192-8.
Jerjes W, Peters T, Taylor N, Wessely S, Cleare A. Diurnal excretion of urinary cortisol, cortisone and cortisol metabolites in chronic fatigue syndrome. J Psychosom Res 2006: 60: 145-153
Peakman M, Deale A, Field R, Mahalingam M, Wessely S. Clinical improvement in chronic fatigue syndrome is not associated with lymphocyte subsets of function or activation. Clin Immun Immunopath 1997;82:83-91.
Saisch S, Deale A, Gardner W, Wessely S. Hyperventilation and chronic fatigue syndrome. Quarterly J Medicine 1994: 87:63-67.
Skowera, A., M. Peakman, et al. (2001). “High prevalence of serum markers of coeliac disease in patients with chronic fatigue syndrome.” Journal of Clinical Pathology 54: 335-336.
Skowera A, Stewart E., Davis E, Cleare A, Hossain G, Unwin C, Hull L, Ismail K, Wessely S, Peakman M (2002). “Antinuclear antibodies (ANA) in gulf war related illness and chronic fatigue syndrome (CFS) patients.” Clinical Experimental Immunology 129: 354-358.
Skowera, A., Cleare, A., Blair, D., Bevis, L., Wessely, S., Peakman, M (2004). “High levels of type 2 cytokine-producing cells in chronic fatigue syndrome.” Clinical and Experimental Immunology 135: 294-302.
Underhill, J., Donaldson P, Mahalingam, M., Wessely A, Peakman M. (2001). “Lack of association between HLA and chronic fatigue syndrome.” European Journal of Immunogenetics 28: 425-428.
Wilson A, Hickie I, Hadzi-Pavlovic D, Wakefield D. Straus S, Dale J, McCluskey D, Hinds, G, Brickman A, Goldenberg D, Demitrack M, Wessely S, Sharpe M, Lloyd A. What is chronic fatigue syndrome? Heterogeneity within an international, multicenter study. Australian & New Zealand J Psychiatry 2001: 35:520-527
White PD, Pinching AJ, Rakib A, Castle M, Hedge B, Priebe S. A comparison of patients with chronic fatigue syndrome attending separate fatigue clinics based in immunology and psychiatry. Journal of the Royal Society of Medicine 2002;95:440-4.
Winkler, A., Blair D, Marsden J, Peters T, Wessely S, Cleare A, (2004). Autonomic function and serum erythropoetin levels in chronic fatigue syndrome. Journal of Psychosomatic Research 56: 179-183.
.
You are correct, I would not put such decisions in the hands of journalists. The courts decide when threats have been made and there too I have never found or seen any evidence relating to your claims. You would do yourself a favour if you actually for once provided the evidence to back up your claim on who you are referring to?
Regarding ME, not the label CFS/ME or CFS, if you exclude people with the neuroimmune illness then you wont find anyone with neuroimmune abnormalities. Your criteria select for people with idiopathic chronic fatigue. Why should such people present with such abnormalities?
100’s of papers with people carrying the CFS label have empirically measurable abnormalities. The fact that your patients which you apply the CFS label to don’t mean that you are just selecting patients based on your cognitive biases. Scientist do not do this.
We need a right to reply to you. Why don’t you open a private member only one on your website. You can delete abusive messages then.
People are being diagnosed with different diseases under the same umbrella which causes damage to those who really, really need treatment to prevent them dying.
Why did you make Neurological M.E into a syndrome in the 80’s?
Dear Prof Wessely,
What I don’t understand is that if you see, publish and know about different immune abnormalities why do you still follow the idea that ME is a malformed illness belief. I assume you are still supporting that theory considering your advocacy for the PACE trial which is based on this theory,
Perhaps you could explain your reasoning in simple steps that goes from people having a malformed illness belief to the abnormalities you have just described along with the ME symptoms. Simple steps are necessary for me to understand the chain of reasoning. I’m a mathematician and need to see the argument set out in clear consice terms with each step demonstated by evidence for that step and alternative paths.
He didn’t say abnormalities. He said alterations.
Hi Professor, I don’t doubt that there was some small number of threat(s) and other inappropriate communications but I do have to wonder why a nonrepresentative set of bad behavior from what is, by all accounts, a minority whose words would be condemned by the majority of the patients, is being used as a stick with which to beat the entire population of CFS/ME patients–a population you say you want to help.
all the best,
J
Please do some homework. As a member of voice of young science you can be the first to question why all the scientific evidence proving M.E is an organic illness has been ignored and who Simon Wessely is involved in this? There are about 4000 science papers on a website called M.E research. People aged 18 dying from this illness having suffered a lifetime. We need good people to help us…
two points Ke.
First , you respond to my post in which i actually give you the chapter and verse showing that the patients that we see in the clinic have abnormalities in both their neuroendocrine and immune systems, by saying “if you exclude people with the neuroimmune illness then you wont find anyone with neuroimmune abnormalities. Your criteria select for people with idiopathic chronic fatigue. Why should such people present with such abnormalities?”. I have just pointed you to the evidence that they do.
Second, you tell me what reasonable people who have received threats would do. Well, in my opinion reasonable people who have received credible and serious threats would contact the appropriate authorities and also take the advice that the experts offer. That advice does not include publishing the names or details of those making the threats on the internet. I am a reasonable person.
OK, said my piece. Done my best. Back to work, no further posts I am afraid. .
Yes, Simon, we get no chance of right to reply! I agree with arsionned, we need a space where we can discuss all of the above with you. Whenever PWME or advocacy groups respond – courteously and intelligently – to ‘controversial’ news items, they are either ignored or edited down to a few words by seemingly biased health editors.
Do you think this is fair?
Can I also ask if is it true that you endorsed Elaine Showalter’s book ‘Hystories’, or is this a myth that needs debunking too?
Also, when you wrote in Spectator last year that neurologists you worked with in 1987 were ‘irritated by patients who thought they had ME’, why did you not mention Prof Behan’s work at Southern General neurology clinic. Why did you not mention consultant neurologist Dr Abhijit Chaudhuri’s work with ME patients? You do not present the whole story!
@noodlemaz, Hi, I hope you can learn something from the posters here and will be curious to follow links. No one wishes to be offensive, they just want people to know there is another narrative that does not get the exposure it should!
OK, caught out. I thought I had logged out of the blog, but still seem to be getting updates via e mail! I simply couldn’t resist replying to this.
1. In 1987 I was working at the National Hospital for Neurology in Queen Square, I wasn’t working In Glasgow. So I was describing the reactions of the neurologists, of whom there were dozens, around me. I certainly knew that Peter Behan had a different view, but as I am sure he would agree, he was in a minority of neurologists then and still is now.
2. You ask if it is true that I endorsed Elaine Showalter’s book “Hystories”/ Why did you think that I did? Not long after she published that, I was fortunate enough to meet her socially, and we have remained friends ever since. But did I endorse it? No. I didn’t agree with it. So why didn’t I make that public. Actually I did. http://www.simonwessely.com/Downloads/BookChapters/CFS_Trueillness.doc
I don’t blame you for not knowing this, not many people would take the trouble to track down a chapter in a book published by the Royal College of Physicians. But there are one or two people who have done just that, just as they track every single thing that I have ever written on anything, trying to worm out of it anything that can be in the slightest discredible to me, and if they fail to find anything, they simply distort, misquote or on occasions simply invent it. It is far easier to spread the view that I agree with Elaine on CFS than actually report the fact I debated in public with her at the Royal College, that I disagreed with her, and that we both published our dissenting views afterwards. And yes, we are still friends.
It is after enduring twenty years of this that I decided to set up the website and put as much as possible of everything that I have published, not just in journals but in the media, on the website. Indeed, if any of you have access to anything at all that I have written and isn’t there (I am afraid I am not the best archivist) please send it to me, and I will add it as well. The only things missing are things that I can;t find anymore. Go on, take the trouble to read what I have actually written, and see then if I am the person that you think I am, or have the views that others have told you that I have. And also just think for a moment who is it that is misleading you, cos I am afraid it ain’t me.
Now, this time I am going to find the unsubscribe button. Apologies for that, but I really have to return to the day job. Incidentally, far from retreating into the lager and hiding away from dissent and alternative views, I have spent a long time doing the opposite, provided that it is expressed courteously, as it usually is. I have a feeling that might have been why I was awarded the prize earlier this week – but I don;t know, because in answer to an earlier post, no, I wasn’t on the committee!
All the best, and speaking personally, I am sorry to hear that you remain unwell, and hope things improve even after all these years. I can speak from clinical experience and say that it does sometimes happen, even if we don’t always know why.
SW
Sorry Simon, didn’t notice your comment to myself as you have replied to arisonned.
It is getting difficult to follow what you are saying when you quote others who say the opposite or what you suggest you are saying, and when you say they did so in 1935, before you were born?
This is what have said earlier.
“The absence of abnormnal tests leads to the erroneous conclusion that nothing is wrong, or alternatively to the understandable but misguided tendency to over interpret minor abnormalities or variants.” – Simon
“I was suggesting that nothing much had changed over the years to 1990, and the harm that this does to patients, that having no abnormal tests does not mean that nothing is wrong, and that doctors must always treat sufferers with respect.” – Simon.
In addition you have also stated that you have had patients take part in some studies where tests have been used and that you have seen “alterations”, not abnormalities. And you have also not said that you test for any abnormalities in order to select an accurate cohort. So as you can see you have not provided evidence that you are looking patients with abnormalities.
Perhaps it would help if you said when you last published any work showing any neurological immunological and endocrine abnormalities in patients? And what tests, if any, you routinely use to classify people as having chronic fatigue syndrome? And finally, how do you know that the patients in Claire et al. or Bearn et al. actually suffered from a neuroimmune disease?
I think it should also be pointed out to you that you didn’t produce a replication study in Erlwein et al. 2010. In fact you didn’t replicate in you cohort work anything from the original study. Instead the patients were selected using the questionnaire reported in Sharpe et al., 1992, which published the so called Oxford criteria. Even Dr McClure failed to reproduce any of the methodology when testing for a synthetic plasmid that had never been detected in humans.
The trouble with these claims of yours, and I notice you didn’t make one in the post above, is that the authorities would always recommend prosecution for threats and it would not take years for them to reach court unless there was insufficient evidence to bring a case. Under such circumstances it would inappropriate to then claim threats have been made as clearly in the eyes of the law there would be insufficient evidence that any such event had occurred. If indeed there was sufficient evidence then you should be able to provide evidence such as a crime number or court document? None of which you have ever presented. Obviously, yes many reasonable people across the 65 million in the UK have taken the advice of the police when they have been threatened.
“OK, caught out. I thought I had logged out of the blog, but still seem to be getting updates via e mail! I simply couldn’t resist replying to this”
With respect – you don’t really do yourself any favours. Why would you “resist” having to answer valid questions from people like Nasim and myself; having been ill half as many years as I have been alive.
You make is sound like a game. It isn’t a game it is life or death.
If you write papers that seem to have such influence on how a disease is treated or not treated in our case then surely it is your “work” to answer questions?
If you know so much about M.E, then surely you are the person who can make a positive difference and here is a place (or your website) that you can correct the misinformation?
Voice of Young Science. Would you care to read about the evidence?
A neuro-immune model of Myalgic Encephalomyelitis/Chronic fatigue syndrome.
http://www.ncbi.nlm.nih.gov/pubmed/22718491
Dear all,
Thank you for your comments – unfortunately I don’t have much internet access as I’m currently on holiday but I will do my best to write my own reply next week.
The discourse so far seems to have been fairly inoffensive, but please note if anyone does move into sounding at all threatening, I will exercise my right to delete and/or edit comments where necessary. So far everything that’s come in has been published.
Those calling for Simon to have his own website open for discussion, may I point you to the general (unpleasant) nature of the internet, and to be mindful that Simon has taken time to come here and actually reply to you personally, for which I am grateful.
But yes, I’ll write more later when I have time – please keep it civil!
M
M:
Did you check your spam folder? Sometimes things end up there.
Volume 9—Somatoform Disorders
2006 Mario Maj, Hagop S. Akiskal, Juan E. Mezzich and Ahmed Okasha
Chronic Fatigue and Neurasthenia: A Review
Michael C. Sharpe and Simon Wessely
“In summary, the core clinical features of CFS are physical and mental fatigue exacerbated by physical and mental effort. These are subjective phenomena, often less evident on objective testing.
While some may interpret this observation as evidence of exaggeration of disability, it can also be interpreted as indicating the essentially subjective and sensory nature of this condition”.
“Our hypothesis is that fatigue syndromes are universal, but that culture is important in understanding the transition from symptoms to disability.
Where there is considerable concern around concepts such as immune dysfunction, viral persistence, and environmental toxicity (irrespective of the true prevalence of all of these factors), there may be a greater likelihood of symptom persistence and severe disability.
Finally, the vicissitudes of the diagnosis of neurasthenia in China are such that this topic deserves a separate text of its own”.
“Poor outcome in CFS is predicted by longer illness duration, more severe symptoms, older age, depression, and lack of social support, and also by a strong belief in physical causes .
Severely disabled patients attending specialist clinics have a particularly poor prognosis”
“The bulk of evidence indicates that there are no proven pathologic or biochemical abnormalities of muscle or muscle metabolism, either at rest or with exercise, other than those associated with deconditioning”.
“A core finding in CFS is that patients report greater cognitive effort and more cognitive impairment than is detectable on objective assessment.
Or, to put it another way, CFS is a disorder of effort perception, both physical and mental”
“Abnormal perception of sleep has also been found in CFS
The source of these abnormal perceptions is unclear, and will require a careful investigation.
Is it a primary central information processing abnormality?
Alternatively, is it the consequence of avoidance of demanding tasks?
Irrespective of the cause, one consequence should be a shift away from unrewarding attempts to show static structural lesions in the central nervous system to studies of what is actually impaired in CFS—the dynamics of physical and mental effort”.
“A systematic review of prognostic studies in CFS found that such strong attributions predicted a poorer outcome.
The mechanism of this effect is unclear. It may be because such an attribution favours focusing attention on symptoms, more passive coping, and greater inactivity, or alternatively, it may lead to non-participation in potentially effective psychological and behavioural treatment”
” … a reduction in the belief that activity is damaging is associated with recovery during rehabilitative therapy, suggesting that it may be a critical psychological target for effective rehabilitation”
“Patients’ beliefs about their illness and associated coping behaviour will be influenced by the information received from others.
A striking social aspect of CFS is the high level of activity of patient support and advocacy organizations, mainly over the Internet.
Studies from the United Kingdom have reported that patients who are members of a support group have a poorer outcome, despite similar illness duration and disability, and a poorer response to rehabilitation.
It is unknown whether this reflects self-selection into such groups or the effect of the group on patients’ beliefs, coping, and willingness to engage in rehabilitation.
Other factors include the experience of repeated questioning of the legitimacy of one’s illness by doctors and others, which probably serves to drive some patients to join advocacy organizations.
Perhaps unsurprisingly, in fibromyalgia, the acquisition of a disability pension is also associated with a worse prognosis”.
“Whatever the biological aspects of CFS, cognitive-behavioural models assume that the symptoms and disability are perpetuated, at least in part, by psychological, behavioural, and social factors.
Biological factors are assumed to be either only partially responsible for the illness or largely reversible”
“The third model emphasizes the role of social factors in shaping the illness.
A fight for the legitimacy of the syndrome as a chronic medical condition is central.
Patient advocacy has been strongly hostile to psychological and psychiatric involvement, probably because it is seen as undermining legitimacy.
The social model proposes that patient organizations, whilst providing valuable social support, can also shape patients’ illness beliefs, medical care, and disability payment seeking in ways that are not conducive to recovery”
“It is important to give the patient a positive diagnosis supplemented with an aetiological formulation.
There is some controversy about whether giving patients a diagnosis of CFS is helpful or harmful.
There are those who feel that a diagnosis enables patients to both conceptualize their illness and communicate about it with others.
Others are concerned about the potentially harmful effect of a diagnosis, arguing that it medicalizes and pathologizes symptoms in a way that can exacerbate social and occupational disability.
The particular label of myalgic encephalomyelitis, used in the United Kingdom as a popular term for CFS, carries with it the connotation of an organic inflammatory disease of the central nervous system, as well as numerous other cultural “tropes”.
“The Management Plan
This should be explained to the patients as following from the formulation, focusing on illness perpetuating factors and consisting of elements aiming to
(a) relieve symptoms such as depression, pain, and sleep disturbance with agents such as antidepressants,
(b) assist the patients efforts at coping by stabilizing activity and retraining the body to function effectively (graded exercise, CBT), and
(c) assist the patients in managing the social and financial aspects of their illness and where possible remaining in or returning to employment (problem solving)”.
“Ongoing litigation is potentially a complicating factor, because it reinforces (and may reward) the patient for remaining symptomatic and disabled”
“The key question for the behavioural experiment is: “Is it possible for me to make changes in my behaviour that will allow me to achieve my goals?”
The patient is encouraged to think of the illness as “real but reversible by his or her own efforts” rather than (as many patients do) as a fixed unalterable disease.
Their ability to make changes is a test of these alternative hypotheses. The aim of behavioural change is to increase activity and to achieve specific goals”
“Patients seen in specialist settings in Western cultures with the label of CFS or its equivalents are often resistant to psychological labels and/or explanations”.
Thanks for this Ern, Wessely almost began to make me think I’d missed something about him. It seems my spellchecker is not so fooled when it suggests I change him to ‘Weasely’. Comments like those you have reproduced above have condemned me to a living Hell for half my life, and all he has to offer in return is simple patronising talk ‘therapy’ that assumes a whole patient community are incapable of thinking for themselves.
You’re welcome, and I am sorry to learn about your situation.
There’s an interesting paper* that I read recently which concludes:
“In many ways, we can see the persistence of Descartian mind–body dualism in the tendency to apply biopsychosocial principles to diseases whose physical nature is less clear.
However, at the same time, advances in medicine are occurring rapidly, and scientific evidence for structural abnormalities and differences in pain pathways are already making the notion of “functional” (without identifiable organic cause) obsolete in the case of chronic constipation.
At the same time, new treatments are being developed, and it might be that a drug or other intervention will effectively treat chronic constipation and its symptoms in the future.
When this occurs, we wonder whether psychological and social aspects of people’s lives will continue to be seen as relevant and important by the health professionals who treat them”.
I don’t think there’s any reason to doubt this will also happen in other diseases (as it did with e.g. the Nobel Prize-winning discovery of H-Pylori as causal organism in stomach ulcers etc – without RCTs), including ME and so-called CFS, as rigorous and methodical science is now more than ever getting to grips with them, perhaps mainly thanks to the discovery and de-discovery of XMRV?
Anyway, I now tend to view CBT for CFS and ME, and what appears to me to be primitve reverse-engineering attempts, as Freudianism dressed up to seem modern, with a scientific-sounding twang.
Highly improbable hypotheses that don’t remotely correspond with reality are inevitable I guess (“fear avoidance” and “deconditioning” and other very weak ideas).
I think it may have been that US Insurance Companies started refusing to pay for endless psychoanalysis, and verily, time-limited CBT and all it’s quarrelling variants miraculously came to pass.
But I’ll stick with science.
*Challenging the Biopsychosocial Model in a Chronic Constipation Clinic
Megan Wainwright, Andrew J. Russell and Yan Yiannakou
Qual Health Res 2011 21: 1643 25 July 2011
There’s an interesting presentation with Q&A about work at Stanford here:
Stanford’s Dr. Jose Montoya on Chronic Fatigue Syndrome
Dr. Montoya discusses CFS and current research regarding diagnosis and treatment and the possible CFS-infection connection.
Regarding the truth or otherwise of the patient communities perception of Prof Wessely, and that of his colleagues Peter White and Trudy Chalder, one has to study a few documents prepared by the above.
First, the lecture notes from Prof. Wessely’s talk, “Microbes, Mental Illness, the Media and ME: The Construction of a Disease” from 1994. These can be viewed online in their entirety, here: http://www.meactionuk.org.uk/wessely_speech_120594.htm
“Let us start with neurasthenia – nervous exhaustion – the precursor of modern ME”
This is an unsound connection. Neurasthenia as a diagnosis was of itself questionable.
“There is also a phenomenon known as myalgic encephalomyelitis (sic) – or ME. This is not open to simple definition – ICD-10 now discourages its use for that reason – instead, I will argue that ME is simply a belief, the belief that one has an illness called ME.”
Prof. Wessely goes on to explain that psychiatric explanations are problematic for insurance reasons, and for reasons of self and societal esteem. He hypothesises that large numbers of people suffer fatigue, and CFS is at the extreme end of that. Prof. Wessely has been instrumental in the conflating of ME and Idiopathic Chronic Fatigue.
He’s obviously never been surprised to find his legs don’t work, or the world spinning round him so that he didn’t know which way was up. He’s never experienced the spikes of neural pain, and he never mentions the brain lesions shown on Tesla 3 and above MRI imaging. Lucky Simon Wessely!
SW ends with a note to himself “For as long as psychiatry exists in the public imagination as it does now, then each generation will find it necessary to discover its own ME”
Prof Wessely gets a credit on the heavily spun, exceedingly expensive, and (if you read the full paper) easily discreditable PACE study, whose lead author was Peter White. I will list below a couple of bullet point problems (among many) with this. See the full paper here: http://dl.dropbox.com/u/44533954/PACEarticle.pdf
* Peter White himself admits that the patients are Oxford CFS patients, not ME patients [1,2] yet the spin has all been of the “Exercise cures ME” ilk
* In order to enter the study, patients needed a SF36 score of 65 or above (the higher the fitter). In order to be counted as ‘improved’, they needed an SF36 score of 60 or above. This improvement level was reduced from the original study protocol from 75 to 60! [3]
The main points of error in PACE are entertainingly illuminated in a series of short videos that can be found here http://www.youtube.com/watch?v=Sa3LyYxu49s&feature=channel&list=UL
Yet, all we are offered, because of the influence of Simon Wessely, UNUMprovident [4], Peter White, Trudy Chalder [5] and others, by the NHS are treatments defined by the assumption of Major Depressive Disorder, the NICE guidelines and the PACE trial.
The reality of what it is like to be struck down with ME, a serious neurological illness that people die from, has been told by the best selling author Laura Hillenbrand, of Seabiscuit and Unbroken fame [6]
Laura went on to tell the ongoing experience of being very ill with this illness in my last link [7]
[1] http://www.meactionuk.org.uk/Hoopers-initial-response-to-PDW-letter.htm
[2] http://www.ncbi.nlm.nih.gov/pubmed/22571806
[3] PD White, MC Sharpe, T Chalder , JC DeCesare and R Walwyn for the PACE trial group; Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy; BMC Neurology 2007, 7:6
[4] http://www.compassonline.org.uk/news/item.asp?n=563 (search for ‘Wessely)
[5] http://www.veoh.com/watch/v19931844B5PjTrh4 and http://www.veoh.com/watch/v19931890Xyz2eEn7
[6] http://www.cfids-cab.org/MESA/Hillenbrand.html
[7] http://www.cfids.org/cfidslink/2009/010708.asp
It is also unfortunate that Prof. Wessely was closely involved in developing policy with regards to benefit entitlements for those with M.E. He warned against its classification as a neurological disease – with profound implications with regards to insurance, legitimate benefit claims etc. As read in the documents recently released via a F.O.I request, he even suggested that if M.E was indeed classified thus, he would lobby hard for other psychiatric disorders to have similar classifications, e.g schizophrenia. This is a muddle of politics and financial interests determining how science should look at disease has always been unhealthy and consistently pointed out by his dis tractors.
And while this remains a matter of intellectual discussion for policy makers, in todays political climate it has resulted in poverty and destitution for some suffers as getting any financial help has been made almost impossible since M.E is viewed as little more than a form of O.C.D. This is hard to swallow when the chief architect to this attitude is collecting rewards and money.
Simon, Thanks for your wishes for my improvement in health, but am realistic enough to know that after 30 years I have probably plateau’d and unless there is a sudden leap in biomedical research – so sorely neglected in UK in favour of misguided psychosocial research these last two decades – I cannot honestly not see a cure in my lifetime. I hope I am wrong. However, I remain grateful that I am no longer severely ill/bedridden – though I’m still affected every single day by ME – and my heart goes out to those who are stuck in the absolute hell of unrelenting symptoms. And the lack of belief – and demonisation – we have all faced at one time or another, undoubtedly makes it harder to deal with the actual physical illness.
It does not surprise me you don’t agree with Peter Behan! However, he was my saviour, he diagnosed me a year after I became ill, and he explained why I felt like I was dying. I am eternally grateful I was referred. (Later, when I read Dr Melvin Ramsay’s book it was an exact description of what I had gone through.) Amongst other things, Dr Behan – as he was then – treated me with anti-viral drugs, a plasma exchange and immunosuppression. He did not cure me, but at least he attempted to treat me medically. I am not sure how I would have coped – especially at my most ill – had he suggested graded exercise and CBT, or suggested I was perpetuating my symptoms with false illness beliefs. It would have undone me.
(And Peter White has acknowledged that people with ME were not actually studied in PACE – rather those with ‘unexplained disabling fatigue’ – has he not?)
And yet the conflation and misrepresentation goes on.
Your choice of friends is your business, of course! But good that you don’t agree with Elaine Showalter, her book ‘Hystories’ is harmful (and risible) but that does not stop gutter journalists like Damian Thompson (Telegraph) from quoting her recently in an attempt to mock/vilify patients with ME. He ignorantly wrote:
“In contrast, medical science has no great difficulty explaining what’s wrong with most people diagnosed, or self-diagnosed, with ME. Their brains create a debilitating fatigue and pain that often correlates with certain personality traits. For example, there’s an overlap between ME and eating disorders…Once you start talking about overlaps you’re in dangerous territory. In 1997, the feminist historian Elaine Showalter wrote a brave and brilliant book called Hystories: Hysterical Epidemics and Modern Culture. She suggested that “psychogenic diseases” such as ME and Gulf War Syndrome had something in common with the confabulated memories of “Ritual Satanic Abuse” and alien abduction.”
It would be good if you could stand up to journalists like this who write puerile, vindictive nonsense. Indeed, if you are being rewarded for ‘standing up for science’, I would expect this is the kind of shoddy journalism you would want to challenge?
As patients with ME we have to put up with this kind of crassness in the press, over and over and over. It is intolerable. And we cannot win. If we respond, we are damned as being overly active/present on forums, yet if we don’t respond we let ugly ignorance go unchallenged. Have you any idea of the abuse PWME routinely face on forum threads – often from so-called medics/scientists and other members of the public – for merely pointing out they have a neuroimmune illness? It is appalling. I find it hard to believe that 30 years after my own diagnosis, this is the state of play. It is no joke to have this illness punching into your life. It is catastrophic. And yet here we all are, on a thread like this, having to tell our stories/link to the literature, again.
And more on Prof Behan here for those who are interested: http://www.meassociation.org.uk/?p=10372
ps. typo: I meant ‘I cannot honestly see a cure in my lifetime’
Wessely came and he lied. He does not use the Fukuda (1994) definition. He is a co-author of a competing definition called Oxford. According to the Fukuda definition, major mental disorders, including depression, are exclusionary. There are eight physical symptoms listed, and a patient must have at least four. It is too general – and the article itself called for research into homogeneous subgroups that could be defined by biomarkers – but it has nevertheless served as the basis for a great deal of research showing physical abnormalities and biomarkers in groups of patients.
The Oxford definition, in contrast, excludes all possible physical explanations, but does NOT exclude any psychiatric diagnoses.
The claim that he uses the Fukuda definition comes from stretching both the meaning of the definition and good scientific methodology. He gets his patients from psychiatric clinics (and ignores that restriction in Fukuda [1994]), then will say that some in the cohort have four of the eight symptoms, such as trouble sleeping, which could be associated with depression or anxiety. The resulting data set is quite different than one which would be achieved using Fukuda (1994) to choose the patients from the beginning.
When backed into a corner on this sort of issue, instead of directly answering why he claimed to use Fukuda (1994) when psychiatric diagnoses are exclusionary, he will criticize his questioner instead, accusing him/her of being biased against mental illnesses (a ridiculous response).
Over a decade ago, Harvard professor Anthony Komaroff announced in a special issue of the American Medical Journal that there was sufficient evidence of biomedical causation to silence the argument that “CFS” is a psychiatric disorder. There has been much more research since then, showing abnormal immune biomarkers (nK function, 37kDa Rnase-L defect, cytokine profiles), viral involvement (Coxsackie B, EBV, CMV, HHV-6A, HHV-7, parvovirus), abnormal SPECT scans, abnormal CPET scores, the simple inability to pass a Romberg test.
Since 1969, M.E. – the disease Wessely really wanted to go after, which he and the late American virologist Steve Straus insisted was a new entity, “Chronic Fatigue Syndrome” – has been coded in the chapter on neurology by the World Health Organization. Wessely and others’ efforts to have it redesignated as psychiatric – first as “hysteria” (when talking psychiatrists lost MS), then as “neurasthenia,” have consistently failed, yet they behave as if they won. In the apparent absence of British female medical advocacy (he insists 90% of patients are female), no one has noticed this is a highly gender-biased campaign. And you won’t learn about any of these discrepancies in the press, because scientific knowledge is censored by the MRC, one of whose members is … The esteemed Dr. Wessely’s wife.
This is a serious disease. The 23-year-old son of a close friend died of it (of a massive heart attack from myocarditis). Young Sophia Mirza died when they refused to believe she could not swallow. She died of dehydration. The inquest determined she died of CFS. The only help medical science had offered her was to send her to a mental hospital and punish her for refusing to swallow.
For better information on this disease, let me suggest the organizations Invest in ME , the Alison Hunter Memorial Foundation , the HHV-6 Foundation , the “25 Percent ME Group” , and the documentary “Voices from the Shadows, .
Them decide for yourselves what a “hero” Professor Wessely really is.
Correction: Sophia Mirza could swallow. She could not tolerate food because of the reaction it produced. Several ME sufferers have died that way (Annabel Senior and Sue Firth being other well-known examples).
Thank you for correcting me; you are right. Here is Sophia’s story for those who want to read about a truly brave young person whose life was cut short because of the mistaken conviction she had a psychiatric disorder, thanks to Dr. Wessely’s successful pseudoscientific propaganda campaigns about M.E. and CFS:
http://www.investinme.org/Article-050%20Sophia%20Wilson%2001.htm
It’s very simple, really. There are millions of sufferers worldwide, and all of them are convinced there’s something wrong physically. Then there is ONE psychiatrist that claims it’s in our heads….and everyone believes him???
Yes, I’m very angry with mr Wessely too, because I’m sure research into this terrible illness would have progressed much further than it did today and maybe even would’ve found a solution or cure.
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I think Professor John Walker-Smith would have been a more worthy winner of the prize…
http://ind.pn/U8VPl6
.
.. in tandem with Andrew Wakefield of course.
No praise for Wakefield goes here. I hope that was a joke.
Fascinating the selection of comments the young ‘scientist’ chooses to answer.
Should go far in the LM/Spiked/SAS/IOI/etc contrarian Axis.
1) I am on holiday with only an oversized phone for occasional internet access so I have neither time nor inclination for heavy reading and fiddly typing. 2) your scare quotes are unnecessary, I have a PhD in cancer research (not ME)… see 1).
So what are you doing masquerading as the youth wing of SAS then?
And, as I lie on my back in a psych unit, where I have been stuck with no medical investigation at all for the last 2y directly thanks to the arrogance and ignorance that pervades the NHS thanks to your hero, believe it or not, I too have to laboriously tap this out on a mere phone! So I can really empathise with your holiday inconveniences. (What is a holiday anyway?)
If you really want to promote science, you should turn your attention to the NHS: they have never heard of the scientific method, and their entire approach is to find out what is not wrong with people rather than what is, and then to give up and blame the patient. Your hero has preyed upon all the ‘leftovers’ that this antiscientific culture creates and caused them much further suffering by insulting their intelligence and deliberately undermining their credibility. He has done far more damage than any antivaxer ever will.
I have never heard of anyone having a phd in cancer research? Could you say what your phd is actually in? Thank you.
What the hell??
“So what are you doing masquerading as the youth wing of SAS then?” – I simply have no idea what this even means. I’m a member of Voice of Young Science, that’s not a dayjob, it’s a matter of volunteering, it’s very intermittent. I went to the event as a VoYS member, not as an employee of SAS (because I am not).
The NHS has its problems, that is a huge topic, and may I recommend David Colquhoun’s blog DC Science for more on that.
Hugo: I worked in a cancer research institute for my PhD. The title of my course was the Molecular Pathology of Cancer Training Programme, joint-run by Queen Mary University of London, Cambridge University, and Cancer Research UK. If you want to know, the title of my thesis is “The effect of chromosome 21 genes on pathological angiogenesis” – I worked in an angiogenesis lab, that is, the growth of blood vessels into solid tumours.
Not that I have to justify myself to strangers, but since you asked.
I would have expected the voice of young science to come from a schoolchild: not a Phd.
However, be that as it may, perhaps you are in a position to organise a campaign through SAS to give patients access to scientists and a scientific, step by step, diagnostic process, instead of the woefully compartmentalised and unfit for purpose, NHS structure of Cerberus-like GPs, and consultants, guarding access to the scientific equipment and staff we need to determine what is causing our ill health. I’d be happy to offer a Spamlet prize for the best effort towards achieving a science led NHS (though I regret I could only stretch to a book token, thanks to having had no career due to the current system).
I totally agree with you Cybertiger. John W-S & Andrew Wakefield have endured much in pursuit of real science and yet it is Wessely’s cronies at the Science Media Centre, who (amongst others) have fuelled the media storm which sought to destroy their careers.
Wakefield pursued money, not science. https://noodlemaz.wordpress.com/2010/05/11/research-fraud-for-dummies/
@noodlemaz Hey again, The reason I am commenting here is to show there are other versions to the ME narrative than Simon’s. There are many doctors – as well as patients – who do not agree with Simon, but they do not get mainstream exposure, so unless you have ME or are curious about the research you will not hear of them: here are some short clips:
1. Professor Behan, consultant neurologist, who diagnosed me in early 80s in Glasgow. Extract from BBC documentary in January 2012. 35 mins in:
‘There is an ‘essential biochemical component to the illness which needs to be elucidated, and research should be along the grounds into these illnesses rather than dealing with psychological talk the talk nonsense’.
Interestingly, Behan examined muscle tissue of some of the original Royal Free patients thirty years later (dismissed by psychiatrists as ‘hysterical’). He and his late wife, Professor of Pathology Dr Mina Behan, identified abnormal mitochondria in those patients.
2. Professor Montoya of Stanford University, who is trialling anti-viral drugs: ‘In my view CFS is another form of death’ 5 mins in.
http://www.meassociation.org.uk/?p=5632
3. From Dr Peterson on ME, in Stockholm last month. He talks about how CFS was the wrong name in 80s (in USA), trivialising the illness. He talks about how post-exertional malaise, neurological and immunological abnormalities, and not ‘fatigue’, are now at the forefront of research .
4. Ulster TV interview with Dr William Weir and Dr Derek Enlander: 4:59 mins in Dr Weir refers to ‘irrefutable evidence of immunological dysfunction’ in ME and at 5:48 Dr Enlander speaks of the urgent need for a multi-disciplinarian approach: ‘This is not a psychiatric disease.’ ‘Psychiatric ailment in this disease is *secondary* to primary physical disease. This *is* a physical disease’.
5. Professor Malcolm Hooper: In 2009, in this documentary trailer, 1.10 mins in, speaks of ‘the 4000 papers on biomedical aspects of this illness that have not been read or addressed, or evaluated by NICE or by government or government advisors’.
http://vimeo.com/10536172
Making a breakthrough
From the website about Donateing to ME reaserch UK and anyone funding it is supporting science and i think Simon would agree with that or is science not important here
Welcome to ME Research UK, a national charity funding biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS).
Around 200,000 people in the UK have ME/CFS, and a significant minority are housebound or bedbound.
We receive no government or other public funding.
In the past 12 years we have funded 32 research projects into ME/CFS, costing in excess of £770,000.
We rely wholly on the generosity of funders such as yourself. Please help if you can.
http://www.meresearch.org.uk/
Turns out Sigmund Freud made a little freudian slip himslef when coming to America with Carl Jung.
“They don’t realize that we are bringing them the plague.”
Isn’t that the truth….
http://poultonblog.dailymail.co.uk/2012/09/me-no-more-in-the-mind-than-multiple-sclerosis.html
Sonia Poulton’s blog
ME is no more ‘in the mind’ than Multiple Sclerosis. When is the world going to get that?
Ever since I first wrote on the subject of Myalgic Encephalomyelitis – or to afford it a more user-friendly title, ME – earlier this year for MailOnline, http://www.dailymail.co.uk/debate/article-2141230/All-mind-Why-critics-wrong-deny-existence-chronic-fatigue.html I have been overwhelmed by the response from patients and their loved ones.
The over-riding message I have received has been one of gratitude. I can tell you that this is something of an unusual
The URLs that I had included in my comments as suggested sources for those who would like to learn more about the diseases that Dr. Wessely claims are due to “inappropriate illness beliefs” did not come through the first time. Here they are:
Invest in ME: http://investinme.org/
The Alison Hunter Memorial Foundation: http://ahmf.org/
The HHV-6 Foundation: http://www.hhv-6foundation.org/
The 25% M.E. Group: http://www.25megroup.org/home.html
The documentary “Voices frm the Shadows” – you-tube trailer: http://www.youtube.com/watch?v=fFd0z15QMzA&feature=youtube_gdata_player
Hi there Noodlemaz
Just though you might find this article about two colleague oncologists interesting:
http://www.tv2.no/nyheter/innenriks/english-version-norwegian-research-breakthrough-can-solve-cfsmystery-3615631.html
Maybe this quote from the article can help explain some of the desperation of the patients:
“When we have cancer patients that are as sick as many of these patients are, they have a very short life expectancy. That says a lot about the quality of life for many of them.”
Best, Kalliope
Perhaps someone could explain to me why certain members of the psychiatric profession, known to either work for or to have worked for health insurance companies, have been so very involved with myalgic encephalomyelitis despite it having been classified as a neurological illness by the World Health Organisation since the 1960s.
Their involvement is incomprehensible, but then so is the giving of this ‘bravery’ award to a doctor who has never shown any actual evidence that a single person diagnosed with myalgic encephalomyelitis has ever threatened him.
Professor Wessely
You write.
“Yes this is indeed deeply troubling, because the full quotation is as follows:
“The absence of abnormal tests leads to the erroneous conclusion that nothing is wrong, or alternatively to the understandable but misguided tendency to over interpret minor abnormalities or variants. The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: “the average doctors will see they are neurotic, and he will often be disgusted with them. Often he sends them away with as little ceremony as possible” (Alvarez, 1935). Thus, attitudes towards psychiatric illness affect both patient and doctor with equally adverse effects on prognosis”
I was quoting myself from a physician at the Mayo Clinic in 1935. He disproved of the way in many patients presenting with what would now be called CFS were dealt with, and continued “and yet these poor people suffer the tortures of the damned”. I was suggesting that nothing much had changed over the years to 1990, and the harm that this does to patients, that having no abnormal tests does not mean that nothing is wrong, and that doctors must always treat sufferers with respect. This misquotation of what i wrote, done deliberately so as to reverse the meaning, is I am afraid all too common.”
I have sympathy with you. You have in this instance been misquoted. But is it not the case that you nevertheless believe we are, or at least treat those diagnosed with CFS/ME as if we were, indeed “neurotic”. You are not challenging the belief of the average doctor who sees we “are neurotic”, You in effect support this belief but call for treatments to treat such neurosis. Thank you so much. You may point to physiological investigations you have conducted but do you not persist whatever the outcomes in the belief that abnormalities are minor because of a preconceived notion that the illness is not “physiology driven”. but a form of neurosis? For you such investigations merely show the power of psychobehavioural issues to influence biological parameters. Have you ever seriously engaged with the proposiotion that for many neuroimmune fatigue oatients the converse is true. You might reply with reference to these quotations:
http://forums.phoenixrising.me/index.php?threads/simon-wessely-quotes.12098/
Are you just unfortunate in your use of words, Professor? Your mate Sharpey with his absurdly titled “Chronic Fatigue: The Facts” also likes to complain about being misunderstood when he spoke of the “undeserving sick”. Well, OK, fine, he did mean that we deserve treatment. I know that. No doubt and he has been crudely and much misquoted. So let’s be subtle: What he meant was “They are psychiatrically ill (neurotic?), and they deserve psychiatric trestment”. Wrong but at least he wants to treat us. No Victorian mine owner here, beholding the ranks of deserving and undeserving poor. Not guilty. But let’s move to the clinical coal face. What about the naughty, naughty patients who insist they are physically ill due to physical causes? What does “undeserving sick “.mean in such a context? Do we then deserve to be sick because we oppose the psychiatric view? Do we then not deserve help because we oppose the psychiatric view.? The experience of many patients on CBT/GET (actually in my case the therapist was fine, just the therapy utterly irrelevant), suggests that “undeserving sick” at the clinical coalface does not mean what it is mean to mean in academic discourse. At the clinical coalface we are “challenging”, “uncooperative” etc, one would almost see some of us as “undeserving sick” in quite another sense. Do you people receive any training in communication? Or is obfuscation part of your game? Sure it’s made easier for you by those among us who insist on talking about real ME when they actually mean physical illness diagnosed as ME but not necessarily actual ME, when ME means “real” myalgic encephalomyelitis but the “M” in ME can mean “arthralgic” etc, I’ve had enough arguments about that I can tell you, but you also love bandying about words and bending the meanings to suit don’t you? “There is only one functional somatic syndrome” What do you actually mean? Underlying autonomic dysfunction? 1001 Dr’s might agree with you but they go on to look at biological mechanisms e.g. Pimentel on fibromyalgia/IBS and SIBO. They attempt appropriate biophysical medicine. Do you?
And what about your repeated desire for rapprochement between psychiatry and neurology? You say yourself that many accepted mental illnesses may involve infection, and yet do you not stand squarely against such an approach to NIMF illnesses? Are you just bandying about words?
What is your actual opinion of the rituximab trials? Montoya etc. ? Do you correspond with those involved?
Do you really believe that so many of us can effectively be treated by a therapy designed for exercise avoidant, deconditioned people with an element of SAD? You know substantial fatigue is involved iin many neuroimmune conditions, you know that infection can be involved in frank mental illness, you know that undiagnosed chronic infection e.g. Lymes can cause fatigue syndrome like illness with hyper sensitivity to stimulus, mental probs etc. about post sarcoid, but none of this seems to inform your activity around ME/CFS.
1) The WHO classified M.E. as neurological.
2) The Myalgic Encephalomyelitis International Consensus Criteria has been set out by EXPERT doctors.
Seriously, does Simon Wessely think he knows more than the WHO and 26 EXPERTS. Google them. They are PROMINENT DOCTORS. Some of them initially, like the majority of doctors worldwide, thought this was a psychological illness, until they did their research.
3) How does SImon Wessely explain the deaths caused by M.E. Perhaps he’d like to explain how Sophia Mirza died of a psychological illness. Oh but she didn’t, did she. Poor Sophia died from M.E. It’s on her DEATH CERTIFICATE. And she’s not the only one – unfortunately.
4) Would Simon Wessely like to explain the atrocities that were inflicted on Ean Proctor?? A young boy who was thrown into a swimming pool and who sank to the bottom whilst psychiatric personnel waited to prove that there was nothing physically wrong with him.. Realising he was not coming back up they had to rescue him.
5) Would Simon Wessely like to explain how he has so much power in the U.K. How his ‘theory’ (and let’s be under absolutely NO illusion, that’s all it is, in fact, it’s not SCIENCE at all) can be allowed to cause such devastation and death.
How could he be awarded a prize that has anything to do with science!! Simon Wessely does not deal in SCIENCE.
The fact is he’s on the panel for “Sense About Science”. Surely that, at the very least, is a conflict of interest. Feel it pertinent to add that Professor Blakemore was also not only on the panel but was a judge. Prof. Blakemore had previously praised Wessely. So this was impartial.
Now there’s a psychological problem, if ever there was one.
CFS is not M.E. For goodness sake, a child could understand that.
Here’s a very interesting link which SImon Wessely might like to read. He may find he’s reading about himself.
To the writer of this blog, and I’m glad you enjoyed your evening, perhaps you’d do your research before praising somebody who has done so much damage and is the LEAST deserving person of any award! I hope this is not construed as a rude post because it is not meant to be. It is simply stating facts and feelings, correct ones not psychological babble.
Thank you.
There are researchers who have done much the same research as Dr Wessely who are well respected by patents – eg Dr Leonard Jason and Dr Fred Friedberg. What is the difference? I think to start with, they engage better with the patient community.
How long is this nonsense going to continue? Harassment of researchers is not acceptable, but poor communication with the community, along with antagonistic comments in the media only perpetuates the issue.
What patients and advocates really want is not to harass researchers, but simply for progress to be made towards efficacious treatments that lets them recover and get on with their lives. The criticism of researchers may be an expression of their disappointment with the lack of progress made in the last 20 years.
Concessions need to be made on both sides.
(1)
Dr Wessely and any of his colleagues that may be in the same boat, simply need to come out and say what the evidence shows: CBT, GET, pacing are merely ADJUNCT therapies.
I say adjunct because the evidence base consistently shows that there are benefits in quality of life, but no improvements in activity levels (actometer data), no improvements in employment status (there have been studies during economic growth periods which have shown no effect).
Sadly there is no suitable primary treatment, so this is what patients are currently left with.
It is necessary for those researchers to come out and say this, because this seems to be clear point of contention. Many patients and advocates are under the (mistaken) opinion that Dr Wessely and others think that this is primarily a stress/psychological disorder (dismissing the biological side), because Dr Wessely has continued to champion only psychological treatments and been overly sceptical of the efficacy of pharmacological treatments when they have been examined in the literature. If Dr Wessely was to regularly come out in support of the researchers doing biologically or sociologically focussed research into CFS, then those people would no longer misunderstand his position.
(2)
The second step is to come out and champion all research into CFS and ME, regardless of whether it emphasises bio or psycho or social. To recognise that CFS is the most neglected illness in the research community, receiving far less than it’s ‘fair share’ of research funding when considering burden of illness.
Given that Dr Wessely appears to be well respected in the research community, he is well placed to be a voice of reason, hopefully increase awareness and ultimately funding to this neglected area. One of the keys is to be agnostic towards what future research should be done, whether psycho or social or biologically focused. (All research has such a primary focus even though it falls into a larger biopsychosocial perspective).
I realise this is a big ask especially given how he has been treated by some people in the community, but if he recognises that the frustration in the community of a lack of progress has been misdirected towards him, he will realise the value of such an approach. If he truly cares about patients, he will understand what benefits this would bring.
(3)
Lastly, the harassment of researchers must stop. This should be all that I need to say, but I will explain.
The key frustration that advocates and patients have is a lack of progress towards treatments that lead to recovery.
But how is harassing researchers going to help? It isn’t. It is just going to discourage other researchers from participating and further halt progress.
Andrew, I quite like your attempt to promote an amicable accommodation of both sides of a very polarised situation. However, you overlook the fact that the patient community have already (long ago) tried this approach. Regrettably, patient conformity and being “nice” merely played into the psychiatrist’s hands. It allowed them to seize dominance in the field, which, with the passing of time and despite a considerably changed landscape of knowledge, they are steadfastly unwilling to relinquish.
I’m afraid there is no evidence of harassment and besides the beliefs of Jason and Friedberg have also been heavily criticised for not adhering to the scientific method. They are merely speculating on what they believe CFS is caused by without empirical data. I don’t think we should celebrate that from anyone.
Hugo, please look into the information I provided above on the PACE trial that Prof. Wessely was involved in, and reconsider your statement. PACE was the most unscientific of trials, and spent £5m in taxpayers funds.
There is no reason to change my statement and it has nothing to do with the PACE trial.
???
Andrew, do you have evidence that anyone diagnosed with M.E. is harassing researchers? if so, please could we see it as so far all there has been is hearsay.
It is the deliberate campaign to present patients with this neurological illness (many of whom are bed or house bound) as ‘terrorists’ (with no evidence that they are anything of the sort ever produced) that is putting off other researchers.
T.Smith said,
“It is the deliberate campaign to present patients with this neurological illness as ‘terrorists’ that is putting off other researchers.”
Professor John Walker-Smith was subjected to a long campaign of corporate terror by the establishment forces of terrorism.
The GMC’s “verdict followed 217 days of deliberation, making it the longest disciplinary case in the GMC’s 152-year history.”
http://ind.pn/U8VPl6
Walker-Smith “paid tribute to his supporters who included the parents of many children with autism and bowel disease seen by him at the Royal Free Hospital in north London up to his retirement in 2001. His supporters say one of the consequences of the GMC’s actions is that families are facing serious difficulties in finding NHS treatment for autistic children with bowel disease. In May 2010, Prof Walker-Smith lost his licence to practise along with Dr Andrew Wakefield who was at the centre of the MMR research.”
Psst … don’t mention anything about vaccines
Andrew said,
“Lastly, the harassment of researchers must stop …. But how is harassing researchers going to help? It isn’t. It is just going to discourage other researchers from participating and further halt progress.”
Dr Paul Offit, American paediatrician, infectious disease expert and pharma-industrialist, has played the ‘poor me’ card too … over alleged death threats etc. Professor David Salisbury, a head honcho at the Department of Health, is the UK counterpart to Offit … and he’s been playing the same game too. Interesting!
Psst … don’t mention the vaccines.
I agree, Paul.
What I’d really like to know is why Simon Wessely, a psychiatrist, has been allowed to gain so much power in the area of Myalgic Encephalomyelitis in the U.K.? M.E. is not in the psychiatric field so what had it to do with him and why has he been allowed to have such control over it?
Does anybody know the answer to this please?
Andrew
Professor Wessely has looked at some biological parameters, indeed. But his overall approach, in dismissive words in promotion of CBT/GET as monotherapies,, Apparent ignorance of much biological research etc. point towards one conclusion – that whatever biological abnormalities are found he will dismiss these as of psychogenic origin, rendering his interest in biology, as far as aetiology and treatment goes, null and void. This FIB mindset is the key issue.
The same can be said of Lightning Process, Mickel therapy, Reverse therapy. They all readily, indeed eagerly point out that they believe ME/CFS/FM are physical illnesses, but what they mean is of biophysical origin and/or with real physical symptoms and real physical changes but with no ongoing biophysical cause. Further they maintain that these illnesses are amenable to their t chosen treatment and in case of failure generally point to psycholgical factors – lack of belief etc. , thought some therapists have been known to say ” we couldn’t treat you because you actually had a virus not ME/CFS/FM etc”. That’s after the presentation of their “explanation” of ME and taking the money.
In fact I see the “get out clause” for Wessely and co.in an analogous mechanism. They will simply claim CFS as theri subset of the illnesses – “FIB + exercise avoidance + deconditioning + SAD” – and as bio research continues they will accept the reality of NIMF patitents for whom this is a red herring but say they were treating something else all along, contrary to much they have done and said. Or they will begin PUBLICLY to disown their false claims, accept the limits of their therapies, support bio research (critically of course, as scientists). If they are worried, as I assume, that some of the efficacity of their therapies is down to placebo, specifically in calming down patients in whom anxiety is a driver of (some) symptoms, which might even be seen as a “nocebo state”, then they need only present their therapy as efficacious for such anxiety driven symptoms in fatigued patients and choose the right patient cohort, rather than peoplel whose primary need is biophysical medicine.
The latest “sneak” imo is so called “functional neurological disease” where symptoms are not accompanied by observable neuroanatomical change. Such illnesses exist and if you haven’t had a stroke you don’t want to be treated as if you have. But the general implication of work done by Michael Sharpe’s colleague Jon Stone is that the ongoing aetiological factors are psychobehavioural, ignoring e.g. immunological, nutritional and any other biophysical factors which may be totally invisibkle to MRI, PET CAt etc. The same old “physical symptoms, physical changes but no underlying physical cause” mindset continues….
For the record I believe that ll above therapies have helped some, as has Dr Stone. But CBT/GET, MT, RT, etc are not one size fits all monotherapies and are presented as such imo merely to maximise placebo..
These are the sorts of scientists deserving of awards, not doctors who repeatedly use the media to make unsubstantiated claims in order to denigrate the very patients they are paid to treat:
‘How infection can trigger autoimmune disease’
http://www.garvan.org.au/news-events/news/how-infection-can-trigger-autoimmune-disease.html
“Australian scientists have confirmed a ‘weak link’ in the immune system – identifying the exact conditions under which an infection can trigger an autoantibody response, a process not clearly understood until now…”
An article by Dr Melvin Ramsay from 1986.
http://www.meactionuk.org.uk/ramsey.html
As I have said before – sorry if I sound like stuck record, but we have to keep trying to educate those who have been exposed repeatedly to only the Wessely school of thought – Dr Behan diagnosed me in 1983/4 according to Ramsay’s criteria. I became ill with Coxsackie B4 in September 1982 and became more and more ill as the months went on. My life changed forever that autumn.
I am not sure if this is another myth that needs debunking – Simon? – but it is said that when Simon wanted to take over as medical advisor to ME Association, Dr Ramsay said, Over my dead body.
People with ME are not primarily frustrated that there is no cure, many people with devastating long-term illness have no cure, but they have not been marginalised, vilified and patronised the way people with ME have. Biomedical research has – until this year – been scandalously neglected in UK in favour of entirely pointless psychological therapies (as is often pointed out £5 million wasted on PACE trial and co-funded by DWP. If that isn’t fishy, what is?)
http://www.meresearch.org.uk/information/publications/casetoanswer.html
Also. Graded exercise makes people with my illness worse. Fact. If people respond to CBT and GET that is great for them, but it does not help the majority of people with ME (this is the criteria problem, who does Simon actually treat/research?).
The reality is people with ME are *not* recovering, no matter what the Wessely school asserts. In my experience, only time and resting, resting, resting can help, spontaneous improvements can occur, but exercise worsens symptoms every time.
After 30 years, I’ve worked this out. Imagine that.
And I am wondering why Twitter/social media have not been flooded by international researchers and patients congratulating Simon on his award if he has indeed done so much for PWME???
I am also curious to know who else was considered for this award?
I was intending to rejoin the discussion after the weekend, so long as things remained courteous. Sadly not to be. When some one writes “Wessely came and he lied. He does not use the Fukuda (1994) definition. He is a co-author of a competing definition called Oxford” what is the point in continuing?
1. To accuse someone of lying in a scientific paper (and in fact it is not one, but probably a hundred) is a very serious allegation to make indeed. And it is not just an accusation leveled at me, but at all my .colleagues and co authors over the years on those CFS papers, probably several dozen at least.
2. The Oxford criteria were published in 1991. By the way the authors came from across the spectrum of those working on CFS back then – only a minority were psychiatrists. Peter Behan, the neurologist mentioned earlier, was one. They were an improvement on the previous 1988 criteria
3. When the Fukuda criteria were published in 1994, these soon became adopted almost universally, and we also started using them. We even published a paper in 1997 describing our semi standardised assessment procedures. For years now every single assessment in the clinic uses the same check list, which generates the Fukuda criteria. The only exception was when the clinic was recruiting for the PACE trial, which did use the Oxford criteria, but still collected data enabling stratification by other criteria as well (which by the way made no difference to the published outcomes) including Fukuda.
4. It is also a pointless allegation. The Erlwein et al PLOS One paper, which is the paper from which I cut and paste, and was the first of many to fail to find the presence of XMRV in CFS, would have been been negative whatever criteria had been used. .
There is simply no point in carrying on if the reaction to the statement that a particular paper of ours uses a particular criteria, and which is itself part of the scientific record and can anyway be easily verified by checking with the rest of our work, is to accuse me of lying. To disagree with the criteria is one thing, but to say that we don’t use them when we do is quite another.
Sorry that you are upset at being called a liar . Perhaps this will at last give you some insight as to what ‘life’ is like for ME sufferers – and those with other poorly understood symptom sets. We have to somehow bear up to being called liars* every day of our lives.* Giving the insult another name (hypochondria, anxiety, somatisation, functional etc) just makes it all the more insulting, . I’ve heard and read your pronouncements for half my life and I have no doubt at all that they must shoulder much of the blame for the disgraceful way I and people like me have been treated by the medical profession, and for the way we continue to be traduced in the media. You have led the Inquisition that has tortured us for decades. I should have thought the odd insult would be water off a duck’s back to you, but perhaps there is still some hope after all.
Professor Wessely,
That seems a very convenient and defensive response. I want to know why you didn’t reply to my mail which wasn’t rude. Of course it probably suits you to pick and choose what posts to which to reply.
It’s worrying that you don’t see the irony at the offence you have taken at somebody’s saying you lied. Because of your involvement in a neurological illness, that’s what people with M.E. have to endure each and every day, how would you cope with that, I wonder, when you’re so defensive in just one day here. The lack of empathy from you is seriously shocking.
My questions were:
1) Why you think you know more than the WHO and the 26 EXPERT DOCTORS of the Myalgic Encephalomyelitis International Consensus Criteria
2) How were you, a psychiatrist, allowed to gain so much power in the area of Myalgic Encephalomyelitis in the U.K.? M.E. is not in the psychiatric field so what had it to do with you and why have you been allowed to have such control over it?
3) I also mentioned the ‘award’ you won, stating that you were on the panel and that somebody you know, Professor Blakemore, is not only also on the panel but is one of the judges.
Also, I wonder if you read the link I included?
I’d appreciate a civil reply.
Thank you.
Also why have people with M.E. been permanently banned from giving blood if it’s a psychological illness??
http://www.nhsbt.nhs.uk/news/2010/newsrelease071010.html
And banned from donating tissue, including deceased tissue!
Thank you for responding to my comments, Dr. Wessely. But why did you have to pull in a red herring? This has nothing to do with the discredited retrovirus “XMRV,” which was not mentioned in my post. Why don’t you address the evidence of immune defects and persistent viral infections I DID mention in my post? Why did you not addres the evidence of abnormal SPECT scans and CPET scores?
Did your data sets contain patients who could be concurrently diagnosed with major depression or anxiety? If so, then the data set by definition was not Fukuda (1994).
By ignoring the psychiatric exclusion, and carefully selecting which of the eight symptoms to use, it is possible to shoehorn Fukuda (1994) unto Oxford, but that is not the same thing as using Fukuda (1994). It is elementary statistics that you cannot construct the same data set by first using Definition A, then appending Definition B, as the data set that would be created by using only Definition B to begin with. For example, your data sets surely have not included patients who experienced sore throats and swollen glands, two Fukuda symptoms.
Readers may judge the compatibility of the two definitions themselves. Here is the formal Fukuda (1994) definition from the US CDC’s own website:
http://www.cdc.gov/cfs/case-definition/1994.html
I really had to search to find an authoritative version of the Oxford definition – I presume the one on this page would suffice:
http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/Browsable/DH_4879305
Fukuda (1994), like Holmes (1988), applied only to Chronic Fatigue Syndrome, not Myalgic Encephalmyelitis. The Holmes article was quite explicit in stating that CFS was to replace the diagnosis “Chronic Epstein-Barr,” which had been given to a number of cluster outbreaks of disease in the U.S. in the 1980s. For the definition of M.E. in 1988, one would have to use that from Melvin Ramsay’s textbook. After all, it was Ramsay who is most associated with the shift from using the term “atypical polio” to “M.E.” in the mid-1950s, after the polio epidemics subsided. Interested readers will find Ramsay’s definition of M.E. from his textbook on the disease (1986, 1988) here:
http://www.cfids-me.org/ramsay86.html
Mixing together CFS and M.E. is, as you know, highly controversial, although I have no problem when it is in the context of both being in WHO’s ICD-10 category of G93.3 under neurology. The Canadian Consensus Criteria of 2003 is probably the best example of blending M.E. with the North American cluster outbreaks that had been termed CFS. That criteria can be found here:
Click to access consensus_overview_me_cfs.pdf
I will agree, however, that Fukuda (1994) is too easy to be used as you have. It has been criticized for some time because it is possible to include patients who do not suffer from post-exertional exacerbation of symptoms, or cognitive dysfunction, two hallmark symptoms of M.E. Consequently, a new definition of M.E. was recently created and published in the refereed medical professional “Journal of Internal Medicine” (Carruthers et al 2011). According to this definition, post-exertional exacerbation of symptoms is a requirement for diagnosing M.E. In research it is suggested that objective testing be used for that requirement, preferably a two-day CPET (specifically, VO2 MAX) exercise test. Evidence has shown that those patients who can do the test on the first day experience a drop of 50% on the second. Your prescription of Graded Exercise Therapy can only harm these patients – as over the years it has harmed many, many others.
I am a little confused Simon. You haven’t denied that you use the Oxford criteria?
1) The comment “He does not use the Fukuda (1994) definition” did not mention a paper or papers, but what criteria you use, but your response is about papers and what others have done and not done. And you don’t deny using the Oxford criteria in your response. Could you be clear?
Regarding the Oxford criteria that you were instrumental in creating, this criteria selects for idiopathic chronic fatigue or fatigue of a psychological origin. You have used this criteria in many papers. The criteria defines fatigue as weariness and fatigue is the only mandatory criteria. Thus far no abnormalities or “alterations ” have been detected in any population selected using the Oxford criteria which cannot be explained by mistakingly labelling people with fatigue subsequent to chronic stress or depression. It is likely that your patients probably do fit the criteria for a diagnosis under Fukuda but so would patients suffering from prolonged elevation of stress hormones or depression. Studies reviewing the various criteria have reported that the prevelence of “CFS” as classified by the “Oxford” instrument is some ten times higher than the rates produced by using criteria requiring the cardinal presentation of ME/CFS, namely a worsening of symptoms or a full blown relapse following even trivial increases in physical or cognitive activity.
2) The 1991 so called Oxford criteria do not require any objective sign of neurological dysfunction, so it is irrelevant who the authors were as it was clearly not describing a neurological disease. Whereas ME is a neurological disease. In fact it really only asks that a person have subjective fatigue and no organic cause to that fatigue. Furthermore the Oxford criteria was never deemed to have replaced the 1988 Holmes CFS criteria and is hardly used at all.
3) You state that you use a check list in the clinic that generates the Fukuda criteria. What you have not said is that you are using the Fukuda criteria. Does this check list also generate the Oxford criteria? White et al., also claimed to use the London criteria, so at that time the clinic may have used a different check list. Obviously here I am ignoring that the London criteria have are unpublished, validated or operationalised and that there are three versions. And that the Oxford, which was used as the initial screening tool by White et al., would have removed all ME patients at the start of the selection process before use of any other criteria.
4) You have stated that Erlwein et al. 2010 “would have been been negative whatever criteria had been used.” Are you saying that you reported the patients in this study without reporting the presence or absence of measurable biomedical and neurological abnormalities against the Fukuda et al. 1994 guidelines? You tacitly admit that you are fully aware that the use of different criteria produces patients with different objectively measurable abnormalities.
It is a shame that my previous comment is still in moderation. I would like to know Prof. Wessely’s response to it.
Sorry for the delay, I’m still away at the moment, until this evening. May also be closing the comments soon as I think there’s probably not much left to add here.
Simon wrote (above):
“By the way the authors came from across the spectrum of those working on CFS back then – only a minority were psychiatrists. Peter Behan, the neurologist mentioned earlier, was one”
Simon also wrote (www.kcl.ac.uk/cfs/name.html):
“In 1991, a group of UK psychiatrists convened a meeting in Oxford, attended by doctors of all disciplines, to discuss the same issue. They reached the same conclusion, that CFS was a better scientific term”.
The meeting was attended by 8 individuals from psychiatry/psycholgy, and by only 13 individuals out of the 19 from other fields listed on the paper.
Peter Behan was one of those unable to attend.
On the Oxford criteria paper It’s recorded:
“The conveners wish to thank all the participants and Professor Anthony Clare for his chairmanship.
They also wish to thank Duphar Pharmaceuticals, Dr Peter White and Professor Michael Gelder, for financial support”.
http://webspace.webring.com/people/up/peterac/oxford_criteria.html
http://web.archive.org/web/20031210171945/http://www.kcl.ac.uk/cfs/name.html
I am ashamed to say that I made a major error in my long comment at 12.39, and while much of it is true, the reference check I did was in error. I have not had time to check the correct study, but meanwhile please delete the comment. Thank you.
I have deleted the 12:39 comment – it will remain in the trash folder for a while, just in case.
Thank you. I am impressed by your handling of this debate. Have a safe journey home.
@noodlemaz Agree with clouty, you have handled the debate well, enabling a space for PWME to speak without being shouted down (often, as soon as we start providing links to medical literature in our defence/telling our own stories, we are treated with contempt by a chorus of unpleasant commenters). Would be very interested to know if this thread has changed your perception of the illness ME? Happy to send you a copy of my novel too, can email me thru my blog.
Prof Wessely
Why not ignore those on here you consider rude and engage with the rest? Normal practice on discussion boards. Then as long as you do not mistake challenging you for rudeness , we will be fine.
I presume that as a man concerned for fairness you are not accusing all who challenge you on here of rudeness, and that as a man concerned for honesty you would not use such an accusation as a pretext for failure to engage with substantive issues,.
It is interesting to note that this thread hasn’t yet recorded a single comment in support of Prof. Wessely. (other than his own – assuming it is he who has posted them)
It is also surprising that in light of the comments that have been posted, Prof. Wessely isn’t more eager to redeem himself in the eyes of those who distrust him and who view his work as fundamentally dishonest and having done so much harm.
In my opinion, a true scientist, possessing a genuine intent to advance scientific knowledge, would have been utterly mortified by such accusations and have urgently sought to address them directly in a clear, concise and diligent manner.
“In my opinion, a true scientist, possessing a genuine intent to advance scientific knowledge, would have been utterly mortified by such accusations and have urgently sought to address them directly in a clear, concise and diligent manner.”
Hear, Hear, Paul! Come on, Wessely!
Psst … in his new book, Ben Goldacre said, “Medicine is broken” …
http://www.badscience.net/2012/09/heres-the-intro-to-my-new-book/
…without once mentioning the problems of vaccine-industrialisation.
http://www.badscience.net/2012/09/holy-crap-i-just-touched-my-new-book/
i have been called a liar for the past 20 years, yet my medical records can prove otherwise, but luckily the new M.E ICC published in October 2012 can back up everything i am saying!! are you going to say that the publishers of this have aberrant beliefs about my illness and recommend that they have CBT/GET also??
Psychiatry is a language art. A pseudoscience that parody’s medicine to lend themselves credence.
Psychaitric theory is one of the greatest charlatan notions ever purpetrated on humanity.
Psychiatry is a social control system, the secular state religion to be more precise. It suits the tenets of those who pray at the altar of medicine.
“In my opinion, a true scientist, possessing a genuine intent to advance scientific knowledge, would have been utterly mortified by such accusations and have urgently sought to address them directly in a clear, concise and diligent manner.”
Seconded. In fact this is the heart of the matter.
What we are all part of – emotions aside – is a simple debate regarding the cause of this disease. I have read most of the Psychiatric literature, which for me is no problem because I have an academic background. I understand the complexities of trying to unravel cause and effect with regards to brain and behavior. But never are these theories simplified and put out into the public domain – please put your cards on the table and say what you think.
Instead all we have is numerous articles in newspapers – sensationalist spins on who deserves benefit, who is really ill, who is perhaps mad. Time and time again. Even appearances on the BBC to claim that these people must be ‘deranged’ in some way. What sort of professional scientist uses everyday pejorative descriptions of mental health to denigrate a patient group? Using the very stereotypes that society has about mental health, which the patient group has been accused of bolstering – to beat them with?
So no more political editorials in newspapers, Lets have open clear public debate.
Again this is a simple issue – the cause of a disease – and lets not forget that Maddox himself was skeptical at first when AIDS began to rear its ugly head.
David MG
Quite possibly if appropriate research, clinical investigation and treatment were undertaken those with the “disease” would be found to have numerous different condiitions. Rituximab trials may be the start of this process.
Your debate may never happen. Committed as SW is to FIB dogma he cannot in principle countenance such research or any real engagement with bio-physicalist challenges. Such engagement would only encourage a culture where the condition is viewed as being bio-based to the detriment, from the FIBBER viewpoint, of patient welfare. Apart from our alleged rudeness, that is the real reason why we have waited in vain for any proper engagement with SW.
I suspect SW knows that the whole contingent of ME/CFS diagnosess does not fall into his exercise avoidant/deconditioned/SAD category, He has advocated some more extensiive differential diagnosis e.g. toxoplasmosis, but I wonder if he in fact believes many of us are psychiatrically ill in ways which CBT/GET cannot hope to address. He doffs his hat to the physical side via GET, while knowing full well that a bit of deconditioning and SAD does not produce the physical symptoms of ME, but no longer dares to say what he really thinks produce them (character, neurosis etc.), So weak as they are while CBT/GET remain the flag bearer for the psychiatric approach they must be defended and certainly not by debate with physicalists. Debate will undermine the theory behind CBT/GET, which, I guess, he knows is weak, and will enhance the authority of the physicalists, but more importantly for SW will undermine the reputation of psychogenic theories of ME in general. This would be a disaster as he remains committed to the idea that whatever the weakness of CBT/GET theory and inadequacy of outcomes the condition is character/neurosis driven and any strengthening of belief in physical aetiology is a danger to neurotic patients. He will defend CBT/GET as the flag bearer of psychiatric approach, knowing its inadequacies and waiting for the day he can be bolder in calling us “neurotics” with character driven illness. In such circumstances there will be no debate.
The text, context and subtext of all he says and does remains s “Don’t engage with them about ongoing physical causes of illness as that will only convince them their ongoing illness is physically caused””.
Prof. Wessely, it has been reported that “At the fifth oral evidence session of the Gibson Parliamentary Inquiry held on 18th July 2006, the Chairman, Dr Ian Gibson, revealed that Professor Simon Wessely had submitted about 20 pages of “evidence” but would not attend because ‘he’d had enough of ME’.” (1) Is this accurate? If it is accurate, would you post the above to your website and follow through with your promise of Nov. 9 where you stated that “…I decided to set up the website and put as much as possible of everything that I have published, not just in journals but in the media, on the website. Indeed, if any of you have access to anything at all that I have written and isn’t there (I am afraid I am not the best archivist) please send it to me, and I will add it as well. The only things missing are things that I can;t find anymore.” (2) I personally have long wanted to know what was contained in this evidence and I think that there are many other patients who do as well. If you are not in possession of the requested document, would you give your consent for Dr. Gibson to release it if it is still in his possession?
1. http://www.meactionuk.org.uk/A_Farewell_Message_for_Professor_Wessely.htm
2. https://noodlemaz.wordpress.com/2012/11/07/john-maddox-prize-2012/#comment-3046
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I strenuously object to SAS’ choosing Prof. Simon Wessely for its award for standing up for science. It is particularly ludicrous because Prof. Wessely is on the advisory board of SAS and because of his consistent anti-science publications.
I have had ME and studied it and the sociopolitics surrounding it for the last 10 years. I agree with the comments posted at the main article by Dr. Royster, esq. and all the others critical of this award. Prof. Wessely has indeed been compared to Dr. Mengele, and with good reason.
Those who oppose Prof. Wessely are not a “powerful minority” issuing copious death threats. This is a fiction that Prof. Wessely has concocted and promoted in his own media campaign.
Prof. Emeritus Malcolm Hooper, PhD, said it best: Prof. Wessely operates entirely in “defiance of science” (in a monograph with that quoted title).
Making such an award only serves to further people’s distrust of science, which is the opposite of the award’s ostensible goal.
Can you provide a link to this Hooper monograph? I can’t find it. Thanks.
With regard to a comment by Professor Wessely at post #3099, in the interests of clarity and for those unfamiliar with the Oxford criteria, I posted additional detail with two references that can be quickly verified (#3102 Nov 11 at 16:00).
My post has not yet appeared.
I’m sure it’s just an oversight, but I’d appreciate if it could be posted.
Thank You.
ER
http://fatigue.wikispaces.com/Psychiatry tells you all you need to know!!
And rather more, I’m afraid.
Prof W should not be compared to Mengele. Unfair and unhelpful.
Anyway
SAS, bravery, No gulf war syndrome, Simon feels safer in Iraq.
Sounds like he’s been reading too much Andy McNab.
Hoopers Two::Zero Wessely would be a result.
But he won’t come out to play.
I’ve nothing to offer here except anecdote – but anecdote which I strongly suspect points to a wider problem (in the context of “ME”) than is often realized or acknowledged.
I’ve encountered just two people in my life time who were diagnosed (by GPs) with ME. Both had problems getting doctors to take their symptoms seriously. Both resorted to quack medicine when the health service failed to offer any kind of useful treatment.
To cut two long stories very short: one of these people was eventually diagnosed with leukemia and subsequently died; the other was eventually (and more fortunately) diagnosed with coeliac disease ,and with an under-active thyroid. The last time I bumped into the second person, she was (fortified by thryroxine tablets and a gluten free diet) leading a group of walkers on an 14 mile hike through the Pennines.
It is, of course, disturbing that bloods were not taken and WBC counts and thyroxine tests performed in the two cases I allude to, but if it didn’t happen in those cases, I think I am entitled to conclude that it may not happen in other cases; and many conditions are much much harder to diagnose with simple tests.
As a sufferer myself from another unrelated, slightly obscure condition (sarcoid) which can (and did) cause general malaise and which took some time for the medical profession to diagnose correctly, I often wonder how many people with “ME” have entirely physical (and well established) medical conditions which have been mis- or un-diagnosed – simply because they present with rather vague symptoms and/or have unusual syndromes.
@mike Yup, misdiagnosis is a problem too.
http://www.meresearch.org.uk/information/publications/misdiagnosis.html
Just to clarify, I am talking generally above and not making any suggestions about Simon Wessely’s patients. For what it’s worth, I believe Dr Wessely is entirely deserving of the prize he has received.
http://www.bmj.com/content/333/7568/575
BMJ 2006;333:575
Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study
(Hickie et el. 2006)
Abstract
Objective:
To delineate the risk factors, symptom patterns, and longitudinal course of prolonged illnesses after a variety of acute infections.
Design:
Prospective cohort study following patients from the time of acute infection with Epstein-Barr virus (glandular fever), Coxiella burnetii (Q fever), or Ross River virus (epidemic polyarthritis).
Setting:
The region surrounding the township of Dubbo in rural Australia, encompassing a 200 km geographical radius and 104 400 residents.
Participants:
253 patients enrolled and followed at regular intervals over 12 months by self report, structured interview, and clinical assessment.
Outcome measures Detailed medical, psychiatric, and laboratory evaluations at six months to apply diagnostic criteria for chronic fatigue syndrome.
Premorbid and intercurrent illness characteristics recorded to define risk factors for chronic fatigue syndrome.
Self reported illness phenotypes compared between infective groups.
Results:
Prolonged illness characterised by disabling fatigue, musculoskeletal pain, neurocognitive difficulties, and mood disturbance was evident in 29 (12%) of 253 participants at six months, of whom 28 (11%) met the diagnostic criteria for chronic fatigue syndrome.
This post-infective fatigue syndrome phenotype was stereotyped and occurred at a similar incidence after each infection.
The syndrome was predicted largely by the severity of the acute illness rather than by demographic, psychological, or microbiological factors.
Conclusions:
A relatively uniform post-infective fatigue syndrome persists in a significant minority of patients for six months or more after clinical infection with several different viral and non-viral micro-organisms.
Post-infective fatigue syndrome is a valid illness model for investigating one pathophysiological pathway to chronic fatigue syndrome.
Mike, I haven’t read your earlier posts so sorry if this misses something. First ME has been shown to be entirely physical, in as much as other similar diseases such as MS are “entirely physical.”
Second, ME often causes otherwise rare cancers (other than in AIDS) such as Certain leukemias and non Hodgkins Lymphoma, so it is at least plausible that She had ME which caused the leukemia.
And yes, you make a good point that some people do get diagnosed with ME whose main illness is something else and that something else gets missed. I have had ME for 10 years, but was just diagnosed a few months ago with Lyme, which I probably have had for a long time and was missed.
You raise a number of other issues here. My hunch (which can almost certainly be declared correct an prima facie grounds) is that “ME” sufferers fall into three categories: 1) Those suffering from un-/mis-diagnosed “physical” conditions that are already well documented; 2) those suffering from so called “mental” illnesses (eg depression) – illnesses which actually have an entirely physical (albeit thus far incomplete) explanation in terms of brain/nerve chemistry (I don’t think Wessely is wrong to try and help this group of people); and 3) those with one or more as yet undiscovered/undescribed “physical” conditions.
I have, however, no idea what proportions of those diagnosed with “ME” fall into these three categories.
Hunches have no place in the scientific method. You speculate in an area which you clearly know very little about.
There are a few papers suggesting a 50% error rate in diagnosis.
What is more worrying is comments made in some psychiatrists papers that doing medical tests is a bad idea since it reignforces illness beliefs and behaviours. So go to a GP and get a label of having ME it is quite likely that other tests won’t be done. This can result in later disease being undiagnosed as well as a failure to correctly diagnose. I believe that ME can increase risks of things like lymphoma (I thing there was a CDC paper on this recently) so the dismissal and failure to adaquately test people with an ME diagnosis can have serious consequences
Apologies if this is duplicate, but I don’t think worked first time:
@Mike, ME is misdiagnosed and over-diagnosed because of confusion of criteria. I suspect many GPs are still under educated/ misinformed about ME.
http://www.meresearch.org.uk/information/publications/misdiagnosis.html
Thanks for the link. Appears to confirm my suspicions.
Indeed, and more confirmation from this comes from the lead author of the infamous PACE ‘study’. I posted it earlier, to make a different point, but it’s equally valid here http://www.ncbi.nlm.nih.gov/pubmed/22571806
The misinformation surrounding Myalgic Encephalomyelitis and the conflation with Idiopathic Chronic Fatigue (as mentioned earlier) which in large part is due to the boundless energy of the aformentioned recipient of the Maddox prize, has created nothing short of a – tragedy is too mild a word, genocide too strong. Something in between the two would work, but my ME brain is dying.
Man, I have had the same problem in describing the Wessely school et al. For me, its What’s the word for what’s in between massacre and genocide?? I find that amusing, but on the other hand the subject matter isn’t all that merry.
For Mike see my post at:
(e.g.)
Michael C. Sharpe and Simon Wessely:
“Our hypothesis is that fatigue syndromes are universal, but that culture is important in understanding the transition from symptoms to disability.
Where there is considerable concern around concepts such as immune dysfunction, viral persistence, and environmental toxicity (irrespective of the true prevalence of all of these factors), there may be a greater likelihood of symptom persistence and severe disability”
(Above BMJ article)
“The syndrome was predicted largely by the severity of the acute illness rather than by demographic, psychological, or microbiological factors”.
If you’re new to this controversy, take a look at Wessely’s publications on CFS/ME. Then look at the research that offers conclusions that are in conflict with those he has come up with, which have been far more influential. Then ask yourself if the current state of affairs, which has been shaped more by his work than anything else, is satisfactory, or if perhaps we shouldn’t be looking at treatments such as Rituximab, for which there is actually a recent publication that suggests it is an effective treatment.
It’s easy for Wessely to protest that he’s never denied a physical component to this disease, because he hasn’t, though his work has focused far more substantially on a psychological component. The Mayo Clinic quote isn’t valid, but there are plenty of others that are, and they are no less outrageous. If Rituximab is an effective treatment, then why are CBT & GET instead the only treatments considered effective?
Nah, there’s no reason why one person, or even a few, out of millions, would sink to the unforgivable level of sending a death threat. It is because of Wessely’s work primarily that patients are treated so horribly, why the disease is not taken seriously, why it’s not taught in medical school, why everybody, medical science included, knows it’s a psychiatric disease, even though they don’t know how or why they know this.
Never mind the history of Spiked, the Science Media Centre, the Revolutionary Communist Party; never mind Ean Proctor, or even Sophia Mirza or Lynn Gilderdale. Nobody cares. ME is a psychological disease even if Wessely can assert that this is not actually his position, and it’s largely his doing that it’s a psychological disease so far as society at large is concerned.
Mike
I am familiar with sarcoid. Good luck.
False illness belief dogmatism such as Wesseley’s predisposes GPs not to test for less common conditions in fatigued patients.
SW should be as vocal in encouraging broad range testing for unusual conditons, should promote up to date n understanding of physical causes of fatigue, called for immunological testing of suspected CFS patients to elucidate subgroups which might not respond to CBT/GET, show interest in rituximab trials etc. as a possible aid to differential diagnosis, so that he would at last be left with the cohort of exercise avoidant/deconditioned/SAd pateitns who he can actually treat..
As it stands – false belief dogma = do not test= no data on patients= no science, as there is nothing worth investigating which the dogma tells us in the first place.
When he talks of physical aspects, half the time he means physical changes of psychogenic origin and half the time he appears to consider them irrelevant anyway.
He may have been threatened (I hope not), he may be brave, I do not think he is brave “in science”.
I see the Countess of Mar is not a fan of Wessely,
http://www.publications.parliament.uk/pa/ld200304/ldhansrd/vo040122/text/40122-12.htm
“People who know absolutely that they are right are very dangerous” was a
highly relevant quote from the world-renowned psychologist, Dr Dorothy Rowe.
This stuff is truly awful …
… which is probably why Wessely is attracted to noodlemaz
What a hoot! I loved this bit about the Countess of Mar’s speech on the awful Wessely … from Lord Addington,
http://www.publications.parliament.uk/pa/ld200304/ldhansrd/vo040122/text/40122-12.htm
“I shall give the House an example to add to the one that the noble Countess gave. Dyslexia is the one that I know most about. I can remember being told in the mid-1970s that my inability to read and write at the same rate as others was due to the fact that I came from a single-parent family. There are others examples, so I suggest that we take a sceptical look at things. With regard to the noble Countess’s speech, I suspect that there are many libel lawyers who, on hearing our debate, will react in the same way as someone on a diet looking at a cake shop window. It is a lovely feast that they cannot get at.”
Some discussion of the impact of the biopsychosocial model of disability, which Simon Wessely has promoted, here: http://www.internationalgreensocialist.org/wordpress/?page_id=1716
Some discussion amongst CFS patients of Wessely and his work here: http://forums.phoenixrising.me/index.php?threads/simon-wessely-and-all-in-the-mind.13979/
Link to an attempt to gain access to data on the efficacy of the treatments developed by Wessely here: http://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po The researchers involved are fighting to avoid releasing data in the manner laid out in their protocol.
These are complicated issues, but just because some see them as a part of ‘science’, rather than some other classification like ‘politics’, does not mean that when those with power cause harm to others that anger is any less justified or reasonable. Many patients will be so caught up in the anger they feel at having been mistreated that they struggle to express themselves clearly, or understand the issues which have led to such problems with the way that those with CFS are treated (I doubt that anyone truly understands them all at the moment), but we have seen this before with other mistreated groups. There are often complaints of ‘militancy’ when those in positions of weakness refuse to just accept how they are treated, and it could well be that some patients have written foolish things or made threats (although none of them seem to have been acted upon or come to court), but that does not alter the fact that there are very serious problems with the way in which Wessely has encouraged others to treat those patients given a diagnosis of CFS.
Creatine has shown promising results in treatment of depressioin alongside antidperessants. A good deal of depression or at least diagnosed depression may be psychogenic/reactive/exogenous, but whatever the anti-antidepressant brigade say, there is a biophysicla aspect, and SW does not deny. He promotes therapy + biophysical interventions e.g. antidepressants. He emphasises overlaps in CFS/ME/FM/IBS etc as indeed does Professor Hooper. But Hooper looks at the physical. Many psychiatrists are now looking at mitochondrial dysfunction, oxidative stress etc. in depression. So why aren’t SW, MS PW pushing this angle in CFS research? SW accepts infection/immunological changes may underly some mental illness. Why reject it in CFS? If he doesn’t reject it, why push BT/GET as monotherapy?Might it not be possible that that CBT/GET might have better outcomes if supported by biophysical therapies? Are we all really neurotic/exercise avoidant/SAD/deconditioned?
This is not rude Professor. Please answer.
Muscle strength maintaned, endurance decreased in statin tretaed mice. CoQ10 improves function.
Any comments on possible implications for CFS/ME/FM subsets, Prof?
You yourself have noted perceived muscle weakness being greater than actual muscle weakness. Might lowered endurance be a physical reality needing biophysical treatment, with the accompanying psychological effect of increasing perceived weakness when facing acute challenges? This is speculation, but may be worth a thought. it would allow a physical realty and a psychological one.
Prof. You may already believe what the above entails.
You believe deconditioning and a SAD like syndrome is a major player.
So deconditioning and SAD like syndrome physically causes lack of endurance (this is central to your claims for GET), which translates psychologically into perceived lack of strength on acute challenge. (You have claimed to find or have quoted findings of perceived strength less than actual strength).
All you have to do is to open your mind to the possibility that infection, inflammation, mito dysfunction might be the aetiological agents of real physical problems, rather than pinning it all on decon and SAD.
The above model does not reject psychological mechanisms, denigrate the mentally etc.
Do you think there might be anything in it for at least some patinets? I ask the same of Lightning, Reverse, Mickell folk. The RT and MT people admittedly say “well if you have a virus, we don’t treat that” Or “you have an excellent point, while” while at least in some cases promoting a one size for all therapy fro CFS.. LT have thus far just blanked me with talk of the moon and cheese and such like. What do you say?
Mike Schroedinger said
““ME” sufferers fall into three categories: 1) Those suffering from un-/mis-diagnosed “physical” conditions that are already well documented; 2) those suffering from so called “mental” illnesses (eg depression) – illnesses which actually have an entirely physical (albeit thus far incomplete) explanation in terms of brain/nerve chemistry (I don’t think Wessely is wrong to try and help this group of people); and 3) those with one or more as yet undiscovered/undescribed “physical” conditions.”
Which I would largely agree with, except that you’ve missed the fourth category.
4) People with the discrete neuro-immune illness called Myalgic Encephalomyelitis.
I’ve covered that under “3)” – there is, as yet, no *generally* accepted definition of Myalgic Encephalomyelitis – which is (in any case) really just a name for set of symptoms . It can, however, be assumed that we have not yet discovered every disease going and that, in future, one or more causes will be found for the symptoms suffered by many of those diagnosed with “ME”. It seems unlikely that (say) we discovered that a novel virus was responsible, we should then continue to use the term “Myalgic Encephalomyelitis” – though I suppose we might.
You are saying this – 3) those with one or more as yet undiscovered/undescribed “physical” conditions – is ME? No.
ME has been discovered and defined since Ramsay’s work in the 1950s after the Royal Free outbreak. Ramsay’s definition was in place, and is still accurate, but it was sidelined finally by the work of the prize-winner we are discussing here. I can tell you have no first hand experience of the disease.
http://www.cfids-me.org/ramsay86.html
We’re still waiting for actual proof that Prof Wessely has received any death threats from people with the discrete neurological illness myalgic encephalomyelitis. Showing emails and letters (that could be written by anyone) to journalists is hardly proof.
There have surely been police prosecutions, given the number of times Prof Wessely has used the media to claim he has received such threats, and used his claims to demonise a whole patient population.
I would have expected that proof be made before a prize was awarded by scientists. It clearly was not.
MS
SW could do a great more to help the psychiatric side of ME if he took more interest in the infectiive, inflammatory and mitochondrial side of brain dysfunction found in conditions falling into categories 1,2 and Clouty’s 4.,
Professor
Of course one should also bear in mind that cytokines may alter perception (e.g. TNF alpha promotes allodynia), So perceived greater weakness than actual might theoreyically be a function of cytokine activity rather than a psychological mechanism. Perhaps some of both. In infection perhaps such cytokine activity promoting feeling s of tiredness or weakness is protective against overexertion.
Are you interested in this type of neuro-immuno-psychiatry? It’s may be pretty important in some “functional, somatic syndromes”.
As a psychiatrist desirous of blending or merging psychiatry and neurology and with your name at the head of papers on ME, you should be knowledgable about immunological bases of perceptual changes. Are you?
Again the above does not iexclude psycho-behavioural matters, mply denigration of the mentally ill or of yourself, nor does it deny close association of emotional and pain circuitry which might be important in depressive co-morbidities etc
Sorry I meant categories 1, 3 and 4 which would then inform his work on category 2
Actually Neviccelj! there are quite a few papers looking at the phenomenon you have mentioned, from other psychiatrists. In fact some complete models of ‘self perpetuating illness behaviour’ have looked at the role of cytokines etc in trying to make a physiological model of ‘somatic’ disorders.
In fact the very odd thing about these kind of papers is that – yes – in fact studying the interaction of the immune system in the brain – wether fighting infection, or disordered in some way gives you a sufficient biological understanding of the behaviour in people with CFS/ME. The problem is, these ideas are generally then spoiled by having to postulate extra levels of ‘mind’, or a behavioral agent in a weird mixed up dualist way in order to understand some kind of feedback loop for the apparent ‘self perpetuation’.
So in a way this school of psychiatry has touched on an answer that is enough, yet instead of trying to think of ways in which the modulatory effects of cytokines could be damped say, they seam to off load that responsibilty to some other agent of ego – i.e patients bad habits – because deep down there is this belief that just a bit of exercise will make this all go away – mind over brain?!?
Its seen time and time again were dualism is denied, but psychiatry just cant seam to let it go in some odd ‘god of the gaps’ style of intellectual contortionism.
Agreed David MG
The flight intp psychogenic “explanations” only being enhanced by a general refusal to countenance ongoing primary or secondary infection as perpetuators of immune activation.
What is also perplexing is that SW and co. accept autoimmune conditions as worthy of biological treatment, accept that infection may play a role in undisputed mental illness, are coming round to pharmacological interventions in pain syndromes where the brain is thought to be misfiring without apparent neuroanatomic changes, but still support an absolutely reductionist therapy for CFS/ME, even though some patients may have grosss anatomical damage. Makes no sense to me at all.
On behalf of psychiatry there is evidence of immune dampening effects of some antidepressants, by uncertain mechanisms with accompanying improvement in depressive symptoms, but this is not always the case and not the leap to psychology which you rightly criticise.
Though I believe some diagnosees do benefit from psychobehavioural interventions, it remains highly ironic that (a) conditions where the symptoms are predominantly physical should be treated and researched, within the NHS at least,with less regard for the biophysical mechanisms than is given in frank mental illness.
“The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ” (Chronic Fatigue and Myalgia Syndromes. Simon Wessely. In: Psychological Disorders in General Medical Settings Ed: N Sartorius et al. Pub: Hogrefe & Huber, 1990). For the avoidance of doubt, Wessely often claims that this quotation from what he published has been deliberately reversed in order to demonise him, but the extent and content of his other publications on patients with ME robustly counter his proffered “explanation”.
That quote is from here
http://www.meactionuk.org.uk/Wessely_John_Maddox_Award.htm
@Paul Watton
Informed hunches (ie the application of logic and reason and experience) have a crucial role in the scientific method – providing it is realized that the only ultimate arbiter is empirical research.
Empirical research has established beyond doubt that there are people who fall into the first two categories I describe. The only real question (and the only real “hunch” bit of my suggestion) is that there are people in the third category – people suffering from a physical condition (or from more than one physical condition) for which an aetiology remains to be discovered. (In other words, I’m suggesting a possible middle ground between Prof Wessely’s position and that of his opponents.)
Mike Ward
Prof W presents himself as the middle ground. He tells us the war is over. Has that changed the CBT/GET monopoly? We want him ot be concrete. When will he come out say
Some diagnosees may have ongoing primary or secondary infection
Some may have ongoing autoimmune illness
Some may have immune activated states which we cannot understand but CBT/GET will not touch
Some may have gut flora problems
He may say he has said all of this but where is his support for thorough investiagation, subgrouping , dvelpoment of alternatives to CBT/GET, where is his cooperation with the biophysical side?
He can have all the exercise avoidant/deconditioned/SAD pateitns he likes. Let him help them. He can work on whatever techniques he can find to help the hyperarousal found in NIMF. if the techniques are phrama or psychobehavioural but work, who gives a flying tinker? He can work on perceptual disorders which may arise in the context of long term illness – though perceptual shifts might be cytokine based and central to the bio processes rather than psychological. we just don’t yet know.
We are not against middle ground but we will not accept a definition of middle ground which is just more psychologising
“You are physically ill. We sympathise, but the cause of the physical changes is psycho-behavioural and the resolution is psychobehavioural and that goes for the lot of you and what’s more we are not going to test you for physical changes as these are irrelevant as psychology is the key, and they will only convince you there is more to your illness than psychology” This is NICE gold standard for us lot, and until SW starts blowing hard against this simplistic BS , we will be very suspicious of any middle groound he may claim to occupy.
Bravo Neviccelj.
Prof. Malcolm Hooper has (once again) provided us with a full exposition of Wessely’s “dodgy” position, which amply supports what you say: http://www.meactionuk.org.uk/Wessely_John_Maddox_Award.htm
One week on, and despite of all of the criticism of his receipt of this award, Wessely appears to be keeping the money. Would a more honourable person not have donated it all to an M.E. (biomedical) research charity by now ?
He can also look at pain and emotional circuitry in the brain. May come up with some good stuff where depression and FM/CFS/ME overlap. serotonin and dopamine are generally low in many pateints. He could do some good stuff – but not just the CBT/GET farce.
Here is some more middle ground.He wants one functional somatic syndrome to cover CFS/ME/IBS/FM – OK, look at the autonomic system, a bit of psychiatry in the form of stress , sympathetic overdrive over parasympathetic and you can move onto the absence of the housekeeping wave in the gut, failure to move things through, stasis, flora disruption and there you have it Prof Wessley and prof Hooper can meet in the middle. But not if Prf W talk of gut flora is fro Gillian McKeith only.
It is all about normal medicine. What is wroing and how we can treat the given patient, about what is really meant by e.g. f “one functional somatic syndrome” , what is the biology of it ? What is the biology of the given patient diagnosed with CFS – aswell as the psychology. We are, shall we say, sure Prof W does not have the answers and not sure he is really that interested.
We just want proper medicine, which may include plenty SW and co could honourably work on as psychiatrists but not if they wish to subsume neurology and immunology into psychology..
Thank you for your enlightened discussion Neviccelj! I think we both make it very clear that to a large extent this community is well aware of the complex issues involved, and that those in the know have a far from reflexive anti-psychiatry position. I have said this many times, every person I have met with CFS/ME has been empathetic to the plight of people with mental health issues – a lot of the symptoms they suffer are CNS based – why would they not be?
Its this middle ground that is at issue, this perplexing state of affairs that sees the money spent on developing pharmacological treatments for schizophrenia, depression, ADHA etc as worthwhile – despite the bad track record of what has been found – but happily dispensed – compared with the idea that therapy for CFS/ME is necessary and sufficient. No one could argue that structured therapy – encouragement to think happy thoughts, and proper ‘energy plans’ are of no use whatsoever to any patient wanting to rehabilitate themselves. This is our middle ground. An acceptance of how neurology and psychiatry are related. This is the middle ground that they say they offer – but only on paper.
The reason for this is simply because this is theoretically the last bastion of the old paradigm of psychiatry – the idea of the realm of the mind. Prof. W is always happy to point out that this dualism should be consigned to the history books – whilst at the same time holding onto ME, CFS gulf war syndrome whatever else, as real examples of that classic Freudian paradigm of neurasthenia. Its like trying to find anything in the waste basket that is M.U.S that might be a suitable candidate.
As I write this, it sounds like a conspiracy theory – but I have no other explanation for the disconnect between what is written and what is done. Trying to understand what they really mean is like trying to nail jelly to a wall.
This says it all, from Professor Malcolm Hooper, somebody who genuinely deserves the highest award. http://www.meactionuk.org.uk/Wessely_John_Maddox_Award.htm
Thanks, Ann, I tried to post this earlier but it did not get through for some reason. Nice to see Prof Behan quoted here, and much later on, myself, that was a surprise!
This is among the most disturbing quotations
“Professor Wade has written to the DWP advising that, despite the WHO classification, ME/CFS is not a neurological disorder but a “non-medical illness” (letter dated 22nd August 2005 to Dr Roger Thomas, Senior Medical Policy Advisor in the Benefit Strategy Directorate at the DWP). He has also written to an ME/CFS patient: “it is wrong to fit ME/CFS into a biomedical model of illness” (letter dated 7th July 2006)”.
And how will Wade know his patient has said CFS/ME if no testing is done as it is a ” non-medical illness”? What exactly is a non-medical illness, anyway? What a silly term to use (unless it’s insurance speak). Depression, schizophrenia, bipolar, – are these non-medical too? Better open up the mental hospitals then. just watch your back if you see some one with a Samurai sword in your local M+S. Would Wade publicly claim such mental illness is non-medical? Even if CFS/ME were a mental illness, how on earth could one claim it were “non medical”. Sounds like the subtext here is beyond even what SW/MS/PW etc might say. it really is back to the “they are malingering” isn’t it? And if not, it is another prime example of the sloppy, careless use of words which is entirely in keeping with the sloppy, shallow theories they hold.
@clouty
Ramsay’s “definition” is simply a list of symptoms. Until we know what causes those symptoms and have a test for that cause, we can’t really conclude that we are looking at a single clinical entity.
This is sadly true, Mike. The same goes for a number of tests which are claimed to demonstrate ME. They may be sensitive for ME but many are certainly not specific fro ME. but they do show organic abnormalities which one would not readily ascribe to psychological dysfunction in other recognised neuroimmune conditions.
Autopsies showing dorsal root ganglionitis are also sometimes referred to as anatomical proof of ME but I am personally a bit confused as to whether this is the same as or implies myalgic encephalomyelitis.
The term ME unless it actually refers to myalgic encephalomyelitis is imo very problematic.
Ann
The actual category ME/CFS is also a central problem.
I like Hooper and would not like to be critical of him but who is he talking about when he talks about ME/CFS? Actual myalgic encephalomyelitis, dorsal root ganglionitis (anatomists, is that the same as myalgic encephalomyelitis?), candidia sufferers, HHV sufferers. B-cell dysfunction sufferers who respond to rituximab or what? Sadly whatever Hooper says about ME/CFS will be countered by psychologisers who will still say that “many fatigued patients wrongly describe their illness as ME. This is a false illness belief” and they will be right – but their implication that our illness has no ongoing physical cause will not be justified at all. CBTers, Lpers,RTers, Mters who may help a subgroup of diagnosees apply their findings to us all because we have no proper subgrouping. But that is of course down to FIB dogma.
I have no problem with those who are helped by psychobehavioural therapies, no problem in accepting they are/have been physically ill, any more than I do with depressives who are helped by therapy rather than drugs. But drugs are available for depressives too. Drugs are available in what Wade might call “non medical” illness. Where are they for us? CBT/GET monotherapists are not even doing normal psychiatry which treats the brain as an organ. Because at the end of the day for them it’s all about FIB despite the huge unlikelihood of us all having FIB,
Neviccelj,
I agree about the name. I call it M.E. and nothing else. I attend one of the expert doctors who compiled the Myalgic Encephalomyelitis International Consensus Criteria and subsequently the ICC Primer for doctors. He refers to it as M.E. only.
But Prof. Hooper has been an arduous campaigner for us for a very long time. He put the above together. Also, after a horrifying article my Max Pemberton in The Telegraph, Prof. Hooper wrote a letter to The Telegraph.
He’s such an advocate and I’m so appreciative of all he does and I know I’m not alone in that.
We all know that the name CFS was brought in for a couple of reasons:
1) It’s a syndrome – a syndrome is basically nothing. It doesn’t do any harm.
2) The emphasis is on fatigue. That’s nothing really, just tiredness.
The name CFS was brought in for no other reason but to trivialise M.E. And they succeeded!!
Regards.
On November 10, at 15:55, Paul Watton said,
“I totally agree with you Cybertiger. John W-S & Andrew Wakefield have endured much in pursuit of real science and yet it is Wessely’s cronies at the Science Media Centre, who (amongst others) have fuelled the media storm which sought to destroy their careers.”
Strange how the boys and girls of the Wessely School are all so hysterical in their defence of a skeptical sleaze ball like Brian Deer.
Isn’t hysteria a psychological disorder?
It may be induced by environmental and emotional/thought factors but even then bio factors such as genetics may play a role and response of people iin hysterical anxiety states to drugs shows it has a biological aspect. Again psychiatry in mental illness takes the organic brain seriously, in ME/CFs it’s all about FIB……………Your pain…..FIB+ SAD + deconditioning, insomnia FIB…….+ SAD + deconditioning. Bag of baloney.
Ho, ho, I think ‘Na’vi Noodlemaz’ is hysterical … and Wessely too.
It is curious that the Ramsay definition is not considered adequate, when many other uncontroversial illnesses are defined similarly [1,2]. Many illnesses are imperfectly understood. I have far more respect for people who say ‘I don’t know’ than I do for those that stand by their unproven dogma.
At the press conference announcing the results of a study on the lab clone, XMRV and Mouse Leukemia Viruses in ME/CFS, by the USA NIH (note the limitations of the brief) (similar to our DOH combined with the MRC), the lead researcher was adamant that autopsies and tissue studies of ME patients would be too distressing for the donors and should not be done [3]. I can tell you we would queue up for a tissue study, and would be only too happy to donate our bodies after death to aid understanding of this disease. However, it is extraordinarily hard to achieve. I wonder why?
We have a signature in our spinal fluid [4]. Many Tesla 3 and above MRI scans of ME patients show a characteristic set of lesions [5]. We fail the Rhomberg test, and the TILT test [6]. But. That’s not good enough, apparently. We have a typical cytokine profile that differs from MDD. I could go on. Tiredness is the least of our troubles. If you want to distinguish between Major Depressive Disorder, just ask the question ‘If you were well tomorrow, what would you want to do’ – people with MDD will not know, people with ME have a wish-list as long as your arm.
In fact there are huge barriers to obtaining funding for bio-medical research for Myalgic Encephalomyelitis, and when it is undertaken it is often buried. The much vaunted £1.6m MRC allocation mostly went to studies actually studying other diseases (but it might have relevance?!?!!) [7]. Meanwhile, £5m+ was spent on the PACE study.
[1] http://www.alz.org/research/diagnostic_criteria/
[2] http://medical-dictionary.thefreedictionary.com/multiple+sclerosis
[3] http://www.youtube.com/watch?v=WRYNnCdLsQ0 [34 minutes in]
[4] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044169/?tool=pubmed
[5] http://www.anapsid.org/cnd/diagnosis/neurocog.html
[6] http://drlapp.com/wp-content/uploads/TTT_symptoms.pdf
[7] http://www.meassociation.org.uk/?p=9760 (see also first comment on the link)
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